Endometriosis: what does the pain feel like?

Chronic pain is the largest aspect of living with endometriosis. Someone might know what endometriosis is, but factual discussion about endometriosis tends to leave out the very personal story about how it feels.

Endometriosis pain is so subjective. It feels different for every woman, but we shouldn’t step away from trying to describe the experience of it in our own words.

Everyones experience with endometriosis is different

It’s impossible to talk definitively about everyone’s experience of pain and endometriosis, but it’s important to at least attempt to verbalise our experiences.

Exclaiming that the pain is “horrible” and “unexplainable” is partially true, but it also dismisses potential support from someone who is trying to understand your illness.

Broadly there are several types of pain that most women with endometriosis experience, this is by no means authoritative.

  • Abdominal pain
  • Back pain
  • Leg pain
  • Painful periods
  • Headaches or migraines
  • Pain from fatigue
  • Pain from medication side effects and/or treatment
  • Emotional trauma

Abdominal pain caused by endometriosis

What follows is just one experience of endometriosis pain. It doesn’t reflect everyones, but will hopefully give some insight.

Endometriosis feels like a ripple of sudden, twinge-like pain. Like the nerves in your abdomen have been singed with a extremely hot tool. This pain stabs the area below the stomach and just above the groin repeatedly, with no obvious pattern. If you need to imagine the pain, think of the raw, sharp pain of a toothache, and imagine that feeling stuck perpetually somewhere (or perhaps many places) deep inside your abdomen.

The pain is often accompanied by a tugging sensation, the feeling that the area inside you is caught somehow, snagged on some unseen surface.

The pain has no pattern, it arrives and leaves as it wants. It can stay for hours, days or weeks on a whim. It can be escaped only by ongoing treatment, and painkillers. Both of which have their own unique side effects, or may only provide short relief to dull the pain.

The pain caused by endometriosis haunts you both in sleep and in waking, tiring your body and causing chronic fatigue.

Crucially endometriosis can hurt a person constantly, or hardly at all. Such is the randomness of the illness and its side-effects. This aspect of the disease is one of the hardest aspects to come to terms with. Ultimately the ripples of pain appearing (and perhaps disappearing) throughout a year vastly effect a woman’s quality of life.

Endometriosis & back pain

The pain from endometriosis can naturally spread to the back of the body. This is normally caused by two aspects of the disease.

  • The fact that the womb and ovaries are near to, and indeed compliment the back area.
  • The person effected by endometriosis often has to hold herself in such a way to try and escape the worst effects of the pain, causing back pain in addition.

This is complicated further by the fact that the combination of back pain, and abdominal pain makes things like bending, sitting or moving very difficult. At its worst endometriosis causes issues which prevents resting or sitting in a comfortable position.

How endometriosis causes leg pain

This is another cruel issue with endometriosis. The pain from the abdomen spreads down into the hip or leg causing difficulty or an inability to walk. This is due to the fact that the adhesions caused by endometriosis can play havoc with the sciatic nerve. Something as simple as walking becomes a painful, extracted affair of limping and resting.

Painful periods

Most women are experience some pain during their period. This sort of pain feels like a sort of writhing or cramping below the stomach and towards the groin.

Women who develop endometriosis have suffered with extremely painful periods for most of their adult life as a side-effect of undiagnosed endometriosis. They struggle on for years (before endometriosis is diagnosed) in monthly agony. Ignored by doctors, or sent away with only painkillers, there is usually little or no attempt to look at the root cause of their pain.

It’s often (but not always) one of the first signs that something is wrong with a woman’s body.

This complaint is known as dysmenorrhoea, while awful complicates the issue of endometriosis. It does this by:

  • Making people think that endometriosis is “just a painful period”
  • Equating endometriosis with the “female condition” i.e. “being nothing to worry about”
  • Establishing the idea that endometriosis only hurts once a month and therefore “isn’t too bad”.

A common treatment for endometriosis is to prevent a women from experiencing a period by putting her on a constant stream of oral contraceptives, to “trick” her body into believing she is either pregnant or experiencing the menopause. So even women who no longer experience a period, may still feel pain, or worse pain during the time that their body would normally bleed.

The emotional trauma of endometriosis

A frequently overlooked aspect of pain. The emotional toil of managing with endometriosis causes both chronic pain and chronic fatigue in combination.

Living with endometriosis means coping with the following emotional problems:

The pain isn’t insurmountable and endometriosis doesn’t mean giving up on life, or the things you enjoy doing. The first step to feeling better is talking about the pain it causes, not just the outward symptoms, but how endometriosis feels for you.

Regarding your treatment and diagnosis

I welcome your comments below, and this is by far the most popular page on my website. However I must point out that I am not a doctor and therefore cannot advise on your current endometriosis treatment or whether or not you have endometriosis. Discussions like that are best had with your health professional. You are however more than welcome to share your story with me.

Don’t forget to take a look at my help with endometriosis page for more information about living with endometriosis, and how I use pain management to cope with its effects.

About endohope

My name is Michelle B. I'm a endometriosis sufferer of five years. Trying to live and work with this disease as best I can.

533 responses to “Endometriosis: what does the pain feel like?

  1. Thanks for this article – it’s very helpful. I’ve been experiencing heavy and extremely painful periods since the start of it, 18 years ago. I’m 30 years old and gave birth to my daughter three years ago (today!) by emergency c-section. Since her birth, my periods, although very regular, have been increasingly more painful. I have pain throughout the entire month now, instead of just the week before my period. Back pain, abdomen pain, hip pain, leg pain, groin and bladder pain. I’ve recently been in the hospital 4 times looking for answers and all tests have come back negative for kidney stones, gallbladder, uti, and more. One of the doctors in the emergency room asked me if I’d ever talked to my gynecologist about endometriosis. I started doing research and realized that I had almost all of the symptoms (if not all of them) and have been realizing a slow progression of increased pain over the last few years.

    My husband and I started trying for our second child over a year ago and were unsuccessful. After a year of trying, we gave up and found content with one. However, putting the pieces together now, I realize endo might be a perfect explanation for our infertility. Although we’re not looking to have any more children at this time, it’s nice to know there might be a reason as to why it never happened. Something I was chalking up to stress at the time.

    I have an appointment with my gynecologist this week to discuss everything but it all feels so overwhelming, I almost don’t know where to start. I am nervous they’ll insist birth control when I’m not interested. And I know I have to push for a specialist if they don’t agree to pursue these issues further. I’m also of course nervous about being diagnosed and living with this, and then on the opposite scale – not being diagnosed and having to continue searching for answers.

    Just sending a little note out there for others who might be experiencing the same, as I feel very much alone on this journey since I don’t know of anyone else personally who is suffering.

    I can be reached at jayleareid@gmail.com with any suggestions / advice you may have!

    Thanks and good luck to everyone.

    • Michele

      This sounds so much like my life. I am currently in bed in excruciating pain this month. Suffering for years every month. Every ob gyn has dismissed this as dysmenorrhea or go on the pill. Now I can’t even go on the pill as I’m 44 years old and bloodwork revealed issue w clotting so they won’t give to me. I’m reading alot about this and learning that only specialized surgeons (few in country) can handle this but do not take insurance. I am in no financial situation to spend $25,000 on a surgery to get rid of this. Although I’ve never had a lap to confirm this diagnosis I am 100% sure I have it. You are not alone. I do not know where to turn. I am so sick of suffering every month and how this plays into my quality of life. Its horrible

  2. Hi all. I’m trolling through the Internet to find an answer and maybe this is it. I am in pain the majority of the time. Pain in tummy, back and legs. I’m getting a little low with how it’s wearing me down. Is this the kind of symptoms everyone else has experienced. It feels a little better when taking birth control but periods really heavy. Thank you if anyone gets back

    • Paula

      That is the same pain I have. My tummy is tender to the touch but I’m always in severe pelvic & leg pain. Check w ur gyn. At the very least they should do an ultrasound. It could be endo but it could be cysts or fibroids. You really have to push doctors to do what u need to for ur health. I went to one of the best & he didn’t even want to do a lap to look around. I went elsewhere & I’ve had 2 surgeries to remove it & a hysterectomy. We’re the ones in pain & it’s seems the norm that they brush us off….

    • vangie

      Yes. I’m having the same pain in my pelvic,back, and yes my LEG. For me I think it’s time for a second surgery .

      • Hi
        When I started my period it was never this bad….few years ago it started.
        So bad that I had to leave work to go see a doctor. They told me its normal for the last couple years…im 25 now and believe it or not it actually showed the endometriosis on a scan…I was terrified. Wanting a baby for +-2 years now…thinking that I was the only one struggling to fall pregnant.
        Well I was in tears after leaving the surgery.
        I have an appointment with a gyn.
        hoping for the best but thinking the worse.
        I have all the signs for very long now.

  3. Annoymous

    Im 15, I keep getting pains in my stomach, ribs, just below my body, my leg sometimes when I walk and my back when I stretch. I also havent been on my period for nearly 4 months what is this?

  4. Mary S

    Thank you! I suffered for years undiagnosed and just went through an 8 hour hysterectomy on Tuesday. They had no idea…took three years to get into the gym department at the VA. They made me feel like it was all in my head for so long! Made them promise a hysterectomy after trying an ablation in September (which failed). She was quite shocked to find my ovaries buried in endometriosis- left had attached to pelvic bone and right to uterus. My post surgical pain is quite intense, but finally having an answer to what the problem was is a huge relief! Ladies…DO NOT QUIT AND ACCEPT ANY ANSWER IF YOU FEEL SOMETHING IS WRONG! You know your body!

  5. Elyse

    Hello, I was diagnosed in December 2014. I have been taking bc pills and still have an iud. The bc pills worked for a short period, but now the pain is back and it hurts more than ever. I have an appointment on Friday with my Obgyn to discuss surgery. I’m not sure it will work, but I am desperate. I cannot stand the pain anymore.

  6. angela

    The past 10 days have been a emotional nightmare. Living a normal life to all of a sudden been burdened with horrendous period like pain in my stomach at 47 I hadnt a period in 10 year with no medical reason ever given. To all of a sudden aquire period pain was unusual to say the least.
    After days of suffering period pain and now backache I decided a trip to the doctors was needed. The doctor has put me on buscopan thinking i could have IBS after 4 days of trialing buscopan I’m still in the same pain I was before going to the doctors.
    I have now been experiencing difficulty in walking,bending,hip pain and along with horrendous back and stomach pain.
    I wasn’t convinced about the IBS diagnosis however I am convinced I have endometriosis.
    How difficult is this illness to diagnose as I don’t no how much longer I can cope with the pain

  7. Sarah

    I’m 22 yrs old and was diagnosed at 21 a month before my birthday with Stage 1 endometriosis. I was grateful to have 3 beautiful healthy babies. I’ve always had horrible and painful periods since I got my 1st period. I’ve had my tubes done at 21 yrs old and that’s how I found out I had Stage 1 endometriosis. My lower back always hurt and I’ve been getting a lot of pains shooting through my lower stomach. Now I’m on 2 days of having sharp stabbing pains on the right side of the groined. I’m always feeling tired but yet I can’t sleep with the back pain or the belly pain and now the groined pain and I have days where it’s to much that I don’t want to get out of bed because of how bad the pain is. :/ but my children are my reason of getting out of bed each and everyday. I just don’t know what to do anymore :( I have no one I can to talk to about it because I don’t know anyone else with endometriosis and I don’t really talk to my hubby about it because he doesn’t understand what I’m going through and he usually just says you don’t hear me complain if my back hurts or if I have any kind of pain. So I just suck it up pretty much now and don’t say a word and act like I’m fine even when I’m not fine. It’s been hard road living with this!

    • Karen

      Read that a male endo specialist once said that men having trouble understanding endo pain should imagine what it would be like to have their testicles taped tight to the inside of their thighs and then be asked to walk round and do all their daily activities like that, childcare, work, exercise.
      I would suggest you then throw in bleeding from them so they are sore to boot.
      And that you have constipation from bowels bound up in scar tissue and pain using the bathroom.

      I don’t think they would just suck up THAT pain somehow!

      In fact, that’s why there is pitiful little research – it doesn’t affect men’s quality of life, their livelihoods or their virility. It’s not damaging their organs. If it did, that would be another story. Research would have had money thrown at it for decades.

  8. Carol McMahon

    I have been suffering with out of character period pain that is hard to describe. The last 5 months or more I have had really bad back pain which I have never had in my entire 38year life when having a period Or after my period which is when it seems to come on. For the first time ever my period only lasted total 4 days when it always has gone for at least 6-7. I also get weird pains right across my abdominal region??? have had an ultrasound on my uterus and nothing seems to be of concern????

    • Heather

      It’s my understanding that endometriosis can’t been seen with an Ultrasound, or any other imaging for that matter. I had a laparoscope done after all of the imaging came back negative and it turns out that I did indeed have endometriosis. My doctor had warned me prior to the tests that only a laprascope would be able to identify endometriosis, but he needed to rule out other stuff first.

    • Elizabeth Dillon

      Don’t just settle for an ultrasound!!! Endometrosis can only be seen when a laparoscopy is carried out it does not show up on an ultrasound . Push push push your GP don’t accept no for an answer – I have been in constant pain since 2013 due to being fobbed off – It sounds like you have endometriosis and the longer it’s left undiagnosed the worse it gets

  9. maude

    I had my first period when I was thirteen, and spent the day thinking I was about to die. Since my mother had painful periods, and I was young and it was new, it was written off. It has come back for at least 7 days a month with varying intensity for 12 years. Usually 2 to 3 days are absolutely unbearable, and involve hours of rocking back and forth on the floor crying, running hot water over my back, heating pads and enough OTC painkillers to ruin my kidneys by now. The pain is so intense that I become disoriented and dizzy, nauseous and I will commonly vomit. During finals week in college, I passed out twice in the same day, probably because of the stress plus the unbearable pain. I have had 4 separate doctors tell me that its just part of life. I have to move carefully now, because flexing my stomach at a certain angle or moving my hips a certain way results in a very strong very sharp pain, like I am ripping my body apart. I feel like I go through the pain of childbirth every month! I have had ultrasounds and blood tests and a lot of stupid insulting comments from doctors until I lost hope. In the pain, in the moment, I contemplate suicide because I cant live life like this another decade. I finally turned to the black market to buy the only thing that has ever brought me relief: opiates. Expensive, sketchy, and dubious quality and content have still given me the ability to hold down a job. When i think of the doctors who ignore someone like me, it seems criminal to deny me medical attention just because I am a young woman and my pain is related to menstruation! That is my story, the story of a broke ass young girl who “just hasn’t learned how to handle cramps”

  10. Brittany

    This article is incrediably helpful! I’ve had it since i turned 15 which is strange considering how young that is! I wasn’t diagnosed until I had a molar pregnancy and also had to get an ovary removed. I get cysts on my ovaries every month and one was once to big to the point we had to get one taken out, and while getting those procedures done they found so much of the endo,. I was than getting surgery to reduce the amount that they found, and than put on a shot for 3 months that basically put me through early menopause.. I’ve become fairly use to dealing with discomfort at this point but sometimes there are days i feel like im crazy! and trying to explain to people what that sort of pain feels like is almost impossible! and that is ok because im thankful no one else has to understand that, im happy they dont have to endure it. This article is very self reassuring to make sure you really arent crazy, and you really aren’t being more dramatic than you believe you should be! So thank you so much for this article.. I do have a question though if anyone would be able to answer.. I read somewhere that after 2 years of being treating its very very likely that the endometriois will reoccur where you will have to seek treatment again? This month would mark two years, and i was curious are there any actual tests they can do to findout if its come back? I know that they can only see the endo if they go in and see it well thats what i’ve been told so far so does anyone know if theres any other way to find out without getting another surgery?

    • Donna

      Hi, yes they can do an internal scan which will show up any regrown endo and or cysts.
      i have been back to the hospital myself today and will be starting the artficial menopause injections in a week or 2.
      i was diagnosed at 21 and had endo removed via laproscopy, i have had surgery every 2 years since 2006 and will need another after 6months of menopause although my surgeon says that it could take upto 2years for the body to return to normal (or what we class as normal to us) after the injections.
      I would go to your gp and ask for a referral if you are worried, its always better safe than sorry..xx

  11. Sheri

    I love this article, it is nice to finally understand why it feels like some one is jabbing me with a ice pick in the abdomen randomly and can carry on for an hour or days. Some days it feels like bloating with pain behind it. Pressure, like form fitting pants etc makes the pain almost unbearable. Loose fitting clothes help this a little.
    As if the above is not fun enough, it takes the fun out of sex too,as this only irritates it. It’s worth the pain …most of the time (one time I ended up in the emergency room). Also many people don’t realize that it comes back. With me it’s like clockwork every four to five years. (Unless their is a child in between which naturally clears it up)
    It was nice to see in the article about the chronic fatigue . I do have a busy schedule, kids, full time job, long commute and of course the household chores.(and I’m not getting any younger but I’m only 39) I don’t think I should be exhausted just by the time I get home. So as I face surgery for the 3rd time here’s hoping I get my energy back.

  12. Faye

    Hi everyone, I found out that I have Edno , 2 yrs. ago. I had surgery to remove a fibroid, and as going in to do that they saw endo. I’m stage 3. Today, actually all week has been tough because of all the pain. My pain doesn’t hit during my monthly only after. Weird! But it’s day 3 after my period and I’m so tired , fatigued from hurting. Sometimes the pain killers doesn’t help. But I did find out, that if I eat gluten free and exercise at least 3 times a wk. my pain stats away. I found out my solution, but it’s not easy keeping to a endo diet. So I cheated for about a month! Lol! And now I’m paying for it. If anyone has any questions about trying to live with endo, with out taking birth control or any of the other meds. The dr. Has told you about just ask. I had to find out myself. I did a lot of research. I didn’t want all the side affects of steroids, and I sure didn’t want an hysterectomy. Good luck you all, and God bless!

  13. Cathy

    I had a complete hysterectomy several years ago because for 15 years no doctor any where could figure out what was wrong with me or why I was having all this pain. After my surgery, my dr told me I have endometriosis, as he didn’t know until he got in there to see. He said my ovaries were bound by scar tissue from the endometriosis and your ovaries are supposed to move freely. Long story short, I still have pain from endometriosis. I am not sure if it came back or the dr never got it all but the pain I have is excruciating. It is a constant pain and it feels like something is in there pulling and tearing. Heating pad helps but the pain never goes away. I am not on any pain medicine except otc but it does not touch my pain. I cannot work or do things I used to enjoy. It has taken over my life.

  14. im 26 and got diagnosed with endrometreosis late last year after struggling with pain from the age of 14. i succesfully had a baby at 20 years old with no complications. i struggle with the emotional and physical pain of endrometreosis everyday and have too take a cocktail of painkillers too keep me gping iam unable too work and

  15. Just B

    I’ve had issues with my cycle for as long as I can remember. I started earlier than most at 8 and remember being told to suck it up… that every woman went through it and that I just needed to learn how to deal. In my late teen years it got so bad that I became anemic and the pain got worse… much worse. I didn’t learn about endometriosis until after my first miscarriage… I’ve lost four all together now the last was ectopic and my right fallopian tube was ruptured and removed. I’ve have several cysts, many periods lasting 3 weeks or longer… some days it got so bad I couldn’t even turn over to get out of bed. Yet Now even at 25 doctors are “still not sure it’s Endo”. I’m on bc for hormone balance and have been for almost a year… I’m managing (thankfully without a period for the most part) but I still have good and bad days. Having endo is life changing to be sure, but it’s not the end of life… it doesn’t make you any less of a woman and it’s Not impossible to live with. Wishing you all the strength to get through each day…

  16. Mary O

    I was diagnosed with endometriosis 5 years ago by laparoscopy. However, I had been struggling since I was 13, I am 29 this year. It makes life hard, I often feel tired or in pain and I worry that the painkillers will lose their effect over time. Been through failed IVF, given up hope of having children. Would like my health to be better though, even if I can’t have children. Living life looking for the next toilet all l the time is horrible. Don’t give up hope everyone, hopefully a cure will be found one day soon!!!
    If you are not a member of Endometriosis UK I would advise you to join, they are really trying to be a help as much as possible, they are pushing for better diagnosis etc.

  17. Elizabeth Dillon

    I found you listings very interesting and makes life easier when trying to explain to someone what I’m going through. I have been going to my gp since sept 2013 with pelvic pain, each time being sent away with them telling me it’s periods pains. In February this year 2015 I ended up twice in A & E at my local hospital with crippling pains in my abdomen, legs and back – I was referred to a gynaecologist who did a laparoscopy then discovered that I have severe endometriosis’. During the operation they removed over a dozen adhesions and freed one of my ovaries, the other is fused to my bowel and they were unable to touch this due to further complications. They then put me onto monthly injections of Zoladex (big mistake) the side effects are unbearable and have ruined my life for the last 3 months – still with abdominal pain and side effects of the injection I begged my doctor to bring forward my gyni appointment – I had this appointment on Monday only to be apologised to and told that I’m now having a full hysterectomy in the next 4-8 weeks. I feel completely let down by the NHS, if I had been referred sooner then I wouldn’t be where I’m at now.

  18. emi

    I have all the symptoms but I have more symptoms like hair exsessivually falling out and dry skin all the time. Tired a lot .. It hits me half way in the morning. Feeling nausea and dissy. Blurry eye sight not wanting to drive I’m scared. Doctors said it Was my bowel then it Was cyst. Now it’s a UTI. I’m confussed i dont know what to do anymore. Anymore have advise about my situation..

  19. Danielle

    This article is spot on! I have experienced terrible pains in my abdomen and shooting pain down my legs for years. Every doctor dismissed me and just said we will put you on birth control, your problems will settled. With my last doctor I even explained that I had a family history of endo and that I was positive I had it, her response was- I don’t think so…let’s try a different BC. I was on the verge of a breakdown! That’s when I finally found a Dr who would listen to me. She immediately ordered a lap and sure enough it was endo. After, I began to take my BC continuously to stop my periods in hopes that my pain would go away. Unfortunately, that only worked for a short amount of time. It’s been about 6 months since my surgery and I am having extreme pains again. I hope and pray it doesn’t last long :(

    LADIES- please do not let a Dr dismiss you. If left untreated, you could experience difficulty having children in the future and Noone ever wants to hear those words- you cannot conceive. Do yourself a favor and find a Dr who understands what your going through and wants to help you at all costs…they are out there!

  20. Tracy

    Yesterday I found out I have an endometrial cyst on my left ovary. I have been awful pain for about a year, when it was close too my period the pain would be almost unbearable. I just grinned and beared it. It finally got too where one morning I could barely walk. I broke down and went too the doctor. They found a hemorrhagic cyst, after two months they found the other. Im waiting on my ultrasound results now too determine where we go from here. Im so glad I went and now I have atleast some idea of what is wrong with me!

    • Kimberly

      I believe this is what I have as well. I have always struggled with very heavy painful periods since I was a teenager, however about a year ago I started experiencing this horrible pain that hit all of a sudden, brought me to my knees & could barely walk, fever, nausea, abdominal area was extremely painful to even barely touch, achy muscles n chills, excessive bloating, etc. Nothing helped ibuprofen, naproxen, etc. I ended up in the hospital for almost 3 days under observation to determine if I was experiencing appendicitis or if it was something uterine related. They ended up diagnosing me with endometriosis & said I had an endometrioma cyst rupture. I went to my gyno as soon as I could & she put me on the Lupron Depot shot for 3 months & it was the best pain free 3 months! Once it wore off & my periods started it was right back to the horrible pain, &every month it’s worse than the last. This month i also had what feels like pressure on my esophagus & when i eat feels like the food isn’t going down & almost like it’s stuck. I’m I’m so tired of the pain it’s cauSing & being bed ridden.:(

  21. Hannah

    I am lying here in bed with the worst case of symptoms of endometriosis i have had since the early 90’s. When i was a teenager i had the most horrendous period pain, unable to move and it took everything i had to just be able to walk. Then about 6 years and a large amount of relentless effort trying to explain myself, i was offered a laporoscopy and then found this. I am in 5 days due to have my 15th surgical proceedure (15 over 22 years) and hope it works as this pain is hideous. My stomach feels like it’s on fire and melting into my leg’s, my pelvis feels like it’s in a vice but being stretched apart, i have back pain, leg and arm pain, pain radiating up to my chest and down to my hands. I feel weak, hot, faint and all in all like i am melting. So to sum up i feel like i have been in a fight with a professional boxer ! This disease is horrible and requires a huge amount of stamina, personal strength and mental strength. So if u have it, we are all heroes in our own battle :) keep strong …

  22. This is a very helpful post and it describes my condition spot on!. I was diagnosed in March 2014 with Endo and discovered I had multiple chocolate cysts on both ovaries and was put on OC pills for 6 months.The pain had disappeared and also the size of the chocolate cysts had drastically reduced during this 6 month period.But ever since I stopped taking the OC Pills,I think the Endo has re surfaced and I am in terrible pain the most of the time. Severe pain in the lower abdomen. I’m getting depressed with how it’s wearing me down.The worst part of it is that when people around you think you’re exaggerating the pain, since on the surface I Iook just fine.My doctor has advised me against a laproscopic surgery to remove the cysts since I’m 27 and yet to bear children.I’m glad I found your blog and I find that I’m not alone and people with Endo have experienced similar symptoms.

  23. Danika

    Hi everyone, it isn’t nice to read all of these stories but it makes me feel less alone. I’m only 17 and for the last three years I’ve had doctors dismissing my pain because I’m “too young to have anything wrong with me” and “it’s just what all women deal with get over it”. But out of everyone I’ve grown up with, none of my friends struggle this way. I’ve spent this entire week in bed, missing out on school (Year 12) because I simply can’t walk. My entire lower body is in agony. If I sit down I feel like someone is shoving a wooden spike up inside of me. I feel like someone is simultaneously scratching out my insides while crushing my stomach and I the pain my my lower back and legs is indescribable. I live on 90mg of Codeine with 1500-2000mg of paracetomol every 6-8 hours, plus Tranexamic acid three times a day because the bleeding has rendered me anemic, and I frequently pass out due to blood loss and pain. I’ve been passed around from doctor to doctor, to gynie to gynie, I’ve been put on 11 different birth control pills but I have a hormone sensitivity so they make me throw up constantly. I lost a LOT of weight due to consistent vomiting. I’ve been given the implant in my arm, only resulted in me having a constant period for four months straight. I recently went to another gynie who examined me and decided that she wasn’t going to treat any endometriosis as she believed all my pain was from sexual abuse and consequently PTSD. However she got my ultrasound results back and immediately put me on the waiting list for a laparoscopy and insertion of a mirena. I have been told that my endometrium is approximately four times the average thickness of a normal one. I’m so hopeful that this finally works. I can’t participate in day to day life due to heavy, painful periods that last up to two and a half weeks, I can’t have any kind of sex life, I’m severely depressed, I’m struggling with school and I’m so hopeful I’ve found a solution. This really helped me feel like I wasn’t alone in this. Thank you all xx

  24. Bianca

    I have had bad painful periods since I first got my period in year 5 at age 10. For years a battled with it, along with chronic Migraines (hormonal) and fatigue,having trouble sleeping, sore joints, sore lower back, ex-mar on my hands, constant sinus infections. Thinking that the pains I was experiencing where just normal. It always felt like I was been stabbed in the abdomen, ovaries (mainly right), hip, pelvic area as well as a soccer ball hit and a chain saw. I just wanted to curl up into a ball, fold myself in half or stretch out. No matter what position it always hurt. I have tried many pain relievers none of which have worked all that well. Not even hot water bottles or heat packs :(

    It wasn’t till I got to high school that I realized my pains where different to that of other girls. Especially in year 11 and 12 when I started getting really bad hip pains, mainly always my right side. Had trouble moving around and going up stairs as they aggravated it. My other pains got a lot worse, more trouble sleeping (just can’t get comfy), my libido got high, started having vagina pain, irregular periods 1-2 weeks apart, ovulating twice in a cycle, emotionally unstable some days (combo of all these made it near impossible to concentrate) , after dancing for a little while I would have to stop as I would have the worse pains :( and this year I started to get leg cramps, intercourse hurting continually after the first time.

    I have noticed throughout the years with my pains that I will sit differently and or lie differently to try and compensate it all, which often throws my back out of alignment :/

    All this lead me to Endo after having many doctor visits, blood test and an ultra sound; which didn’t show anything; so was diagnosed with poly-cystic ovaries – the whacked hormone side not the cysts thankfully. I finally got a referral to see a Gyine this year as the pill wasn’t doing anything and was also to higher stroke risk with my Migraines. I got the Mirena put in, in April this year. At my last check up with my Gyine, after I practically screamed at her she finally believes me that I have a few spots. She wasn’t convinced at first because I was so young (18). I am seeing her again in November for an other check up. If my symptoms haven’t changed since then she’s going to take me to theater and perform a lap on me.

    It is very hard most days to find motivation! On the few good days I have, I make the most of it and go horse riding and catch up with friends and if I can afford it get a massage. Other days the love of my job keeps me going along with my Kelpie Max :) who gives me lots of cuddles and gets me out of bed and even the house for a walk or run even on my worst days. When I was studying at High school and my libido got quite high I found the gym was helpful as not only a stress relief room studying but also a good mind distraction. still go when I feel up to it now or high libido.
    On my bad days I take it easy and sleep most of the day, watch some movies, read, eat what ever I feel like and drink plenty of water.

  25. Sara prince

    My name is Sara and I have been living with endometriosis since 2009, after my second child. There are no words to describe my pain until I read this…..
    I have struggled with doctors understanding what kind of pain I have been living with. I have been treated with birth control, Lipton shots, a partial hysterectomy. And still I live with this stabbing pain ! Every time I go to the doctor I am looked at as if I am a ” drug seeker” only leaving me depressed and lost ! I don’t know what to do at this point. I am 28 years old. I have been accused by doctors and nurses for only wanting one thing…., painkillers and the end of the day the only way I can live a normal life is to take pain medicine to get through my day. I am currently trying to get reffered to pain management . Because I cannot find a cure . My gynecologist wants to take my left ovary but at this point in my life i am not ready to give it up. I am sad. I am lost and I need help! I live in chronic pain. How can I go another 20 years living this way?!? Please someone help me. Any words of advice! I need help! Everyday I want to die because I realize there is no help for me….. At then end of the day I just want to be happy with my two daughters and husband. This condition has ruined my life. I feel that doctors do not understand how painful it truley is and only look at me as a 28 year old looking for drugs! …… I need help

    • Paula

      Sara
      I know it’s terrible. I’ve been living with these awful pains since 2001 & am 37. I finally had a full hysterectomy but am still in pain. There is something wrong w my pelvic/abd/leg muscles & I have problems sitting, standing & just plain hurts to be alive. I asked my dr. for Cymbalta. I have 3 kids & a wonderful husband. I was feeling so low & just wanted to die but I want to live too & enjoy what I can. I take a lot of pain meds & work full time. People just don’t understand what it’s like to be us. Cherish the beauty in your life & get on an antidepressant that helps w chronic pain too. It will help w the hopelessness. It really sucks but at least we don’t have cancer or Parkinson’s. That’s what I try to remind myself. That as bad as it is at least it’s not worse. Hang in there.
      Best wishes🌻

      • Sara prince

        Are there pain medicine out there that I can take with antidepressants and anxiety? I wasn’t sure you could mix the two!? Thanks Sara

      • Paula

        Sara,
        There are a few. I know cymbalta & Savella are a couple. I go to a pain doctor. I’ve been on Vicodin but it’s not been strong enough. I am now on tramadol. Which is a narcotic that also works as an SSRI & Norepinephrine RI. Try to find a good dr. I got a reference and looked for a pain dr. that was associated w the best hospitals. Cymbalta is for chronic pain, antidepressant & anxiety & I can get it generic. Savella was expensive & I didn’t like the feeling I had. Too out of it … Whatever u get check the manufacturer website bc sometimes they will give u a coupon to get it for cost.

      • Paula

        There are a few. I know cymbalta & Savella are a couple. I go to a pain doctor. I’ve been on Vicodin but it’s not been strong enough. I am now on tramadol. Which is a narcotic that also works as an SSRI & Norepinephrine RI. Try to find a good dr. I got a reference and looked for a pain dr. that was associated w the best hospitals. Cymbalta is for chronic pain, antidepressant & anxiety & I can get it generic. Savella was expensive & I didn’t like the feeling I had. Too out of it … Whatever u get check the manufacturer website bc sometimes they will give u a coupon to get it for cost.

    • Paige

      Sara,
      Endometriosis sucks. However, you have a child which is awesome! Some people with endo are infertile and will never get that opportunity! Also, you are already married which is awesome. Having a good support system definitely makes things better I’m sure. I am 22 and am not trying to belittle how you feel at all. It’s just that who knows if I’ll be able to have kids.. And I feel that having endo makes me isolate myself so i feel that it’ll be hard for me to let someone in on my condition and find someone who is understanding and accepting of it. Doctors thinking you are a drug seeker is CRAZY. But trust me at the age of 19 I was treated the same way.. Passed on doctor to doctor who just gawked at me and didn’t take me seriously and sent me home crying with me thinking it was all in my head. It got to the point where I didn’t know where to go anymore and felt crazy for continuously calling but at 19 I didn’t feel right seeking out other doctors. Stay strong because the good doctors are out there somewhere!! Trust me. Mine was hard to find and I heard from a friend, otherwise I would have never of found my doctor. Don’t let them take your ovaries, I’m sure that does not even help. Especially if you want more kids. I’ve done zoladex injections and birth control which really lessened the pain as well as having gotten 2 laparoscopies to get the endo out. Even one made me improve soo much better! I just got a second when I went to a new doctor and she wanted to make sure it was all gone/taken care of. Hang in there! :) we all are suffering, you are not the only one. But again, thank god there are things we can do to manage it!

  26. Jolene

    Can’t get an answer off my doctor 😒 I’m 34 and got my tubes clamped 3 years age about a year after I started gettin sharp stabbing pains and it felt like it was my overys my doc sent me for an internal to cheak them and saw nothing and put me on the pill (witch is the only reason I got my tubes clapped in the first place so I wouldn’t have to take them) it has not done anything but I’m still trying to cope with the pain now the pain is stronger and shouting down my left leg and even tho I’m on the pill I find two days into the pain that I’m spotting and it’s old blood I’m at my wits end iv 3 kids and trying to cook a dinner on one leg is not funny braking out in a swet at the same time dos this sound like it?

  27. Hi. I’m experiencing more and more pain this year, my mum has Endo, I think my aunty has it, too. Just wondering if as well as the “normal” pains, could it be possible to feel it in the back of your throat? Like, if you sit down too hard?

  28. JSVB

    I was finally diagnosed with cysts on both of my ovaries and endometriosis yesterday. Two years ago I was told I had a cyst on one ovary and that it would probably go away. This was after experiencing severe traumatic pain, unable to walk, screaming in pain, unable to sleep or move. It felt like a severe stabbing pain (no localized spot) in lower stomach above my groin. The doctors would always ask point to where the pain is and I would roll my eyes because when the pain comes on it’s not in one spot!
    After the pain subsides (very rarely do pain killers work) my stomach is tender to touch, urinating and bowel movements are sometimes painful. Sitting is sore, and it’s no fun at all.
    Of course the solution by a gynecologist is always the pill, so I started on that and a week later I was dropped to the floor by the pain, screaming and crying. That is when I finally got a diagnosis from an Ultra sound. I have to take the pill for two months then they will follow up with a pelvic and abdomen ultrasound. If the birthcontrol isn’t working then they will decide whether or not to do surgery.
    You really have to be forceful with your health care provider and continually follow up with them to actually to get them to take you seriously. It is very frustrating, it seems they don’t understand the pain. If my career is hindered because of this, it’s not ok!!! I have made this very clear to my doctors, and finally they are taking me seriously. Sometimes I think if I was a man having this pain who had to be driven home from work because I couldn’t walk, a doctor would solve the problem a lot faster. But because we are women we are just supposed to live with it!

  29. tracydessert

    Thank you so much for this article! the article and the comments have been a huge help and relief for me.

    After some research I believe I have endo, but because it hits 5 days before my period, and isn’t monthly (anywhere between every 2 or 4 months) I never made the connection. I always thought it was gastrointestinal, so i kept trying to avoid certain foods, thinking that was it (dairy, gluten, eggs, etc). Nothing helped. I noticed when the pain started this time, it was a few days before my period, and with the help of my period tracking app, and the sick days i used, i realized it only happened 4 days before my period!

    Went to my primary care doc, and explained my symptoms: one day of the worst diarrhea cramps ever, extreme bloating, entire stomach sore to the touch. Followed by three days of the pain and bloating slowly (and I mean slowly) going away. She said it was dysmenorrhoea, and i should take advil the day before it might start. My head almost exploded.

    Does anyone else have (or have heard of) endo happening before their period? and not happening every month? I’m 45 and have always had non-painful periods (lucky, I know) but at times pretty painful ovulations.

    I have an appt with an GYN that specializes in perimenopuase, and am hoping she can help. *fingers crossed*

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Endohope

My name is Michelle and I've been living and working with endometriosis for five years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

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