About me

My name is Michelle. I’m 32 years old and I live in the UK. I’ve lived with endometriosis for eight years now. Like many women with endo, I suffered with extremely painful periods (silently and not-so-silently) for over a decade.

My endometriosis story

Me in my favourite place - Japan. 私は日本を勉強します。

Me in my favourite place – Japan. 私は日本を勉強します。

I was a regular at my doctors surgery complaining about the insufferable pain that I experienced month after month. Pain that would double me over in agony, cause me to vomit and pass out. It was violent pain that no woman should have to experience. It wasn’t until I developed the horrible, twingy pain that endometriosis caused in my early twenties that I realised something wasn’t quite right with me, that this worse pain with no pattern (which I started to dread not every month but every day) was part of something larger.

Getting my endometriosis diagnosis

I had my first laparoscopy in June 2010 to diagnose me formally with Endometriosis, but that was after months of pain that frankly scared me and came totally out of the blue. The reassurance I got from having a name for what I was experiencing was short-lived, when it dawned on the rest of the world that my pain wasn’t it all “in my head” and my period pain wasn’t “normal”. Almost a decade of pain, fatigue and general health problems finally made sense, and was oddly comforting, but as time passed the realisation of having an incurable chronic illness started to weigh me down.

Further conditions: fibromyalgia and joint hypermobility syndrome

Several years into my life with endometriosis I started to develop new pains all over my body that could not be explained solely by endometriosis. After four years of tests and doctors appointments I was diagnosed with fibromyalgia in 2017, and I also have joint hypermobility syndrome which was diagnosed in 2015. All three conditions constantly fight for my attention. I am in pain every day but I can also feel the differences in some of the pain and symptoms I experience.

At the moment my fibromyalgia pain is the worst pain, and the endometriosis pain is the calmest.

So through the last few years in particular I have begun to realise that endometriosis has the potential to complicate your pain, to change the sensitivity to pain in your body, and cause you to develop other problems and conditions.

I have a happy life, but my all three of my conditions makes little things like having a normal, healthy life a constant battle with my body. I work every hard to manage my pain and I’m successful at it, so good people constantly forget that I am not well.

That’s my story, but it could be anyones with this illness. Endometriosis is a silent shadow on my life, which could be pulling me down, but ultimately forces me to be more inventive – finding bigger and better ways to stay positive and appreciate both my life, and the things I have accomplished despite my illnesses.

Why I’ve made this website

I am not a doctor or medical professional. My experiences on this website come from years of daily experience with endometriosis. I know first hand what this disease can do to the human mind and body. I aim to share my experiences of living and working with endometriosis to help others, and to help with my own ability to cope with the pain and fatigue.

I will also share what advice I have for managing multiple conditions (with different symptoms). I mostly manage with pain self management and exercise. Life with chronic pain is hard and the solution to managing it can be equally tricky. However the hardest part is starting and finding out how.

So endometriosis has many far-reaching implications on the life of a sufferer, and the loved ones surrounding that person. I hope to share what I have learned, to prove that there is hope for endometriosis sufferers, to show that it’s perfectly possible to live happily and successfully with this disease (and others). Crucially I also want to provide advice for the darker days when that’s easier said than done.

Heathline best blogs - endometriosis 2017Endometriosis Awareness Blog Award 20152016 winner best endometriosis blogs

My health status

I don’t drink or smoke. I am a healthy weight with a healthy body mass index. I have good diet, and in 2016 I became vegan after being vegetarian for many years. I chose to do this for ethical and sustainability reasons. I cycle every single day to give me relief from my endometriosis symptoms. I don’t drive, I don’t sit down for long periods of time (I have a standing desk).

More information on how I manage day-to-day is below.

I live in the UK and am eternally grateful for the care I have received from the NHS – despite how long my endometriosis took to be diagnosed (my eight years is sadly the average for most women around the world). I believe that not having to worry about healthcare costs, whether or not I can see a doctor or insurance costs has taken a weight off an already difficult illness.

Everywhere I experience pain in a three part body diagram.

Everywhere I experience pain, with endometriosis in red and fibromyalgia/JHS in purple.

Current chronic pain conditions:

Surgery and drugs:

  • Three laparoscopies (diagnostic and two excisions respectively)
  • I take Norimin daily (no breaks)
  • I have a Mirena implant
  • I take a low dosage of nortriptyline every day
  • No periods since 2010

Pain self management

Memberships & employment

If there’s something else you’d like to know or want to then do get in touch with me in the comments.

Thanks for reading, and I hope you’re as well as you can be.

– Michelle

Advertisements

About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

77 responses to “About me

  1. http://doilooksick.wordpress.com/2012/09/28/the-lovely-blog-award/

    This is one of my new favorite blogs, so I nominated you for a blog award. 🙂

  2. Hi Michelle – I love your blog! Amazing work and posts!!! You’re an inspiration to all endo women!!

    xo Heather @Hello Endo

  3. ajolie7

    Wonderful site! Thank you.

  4. Rachel Cohen

    Hi Michelle! My name is Rachel Cohen and I have endo as well. I am writing a book about endo-it is a collection of women from around the world who have endo telling their stories, lessons learned, and what gives them hope. I was wondering if you would be interested in writing for me? It is a big project, I have around 6 other women from various parts of the world, but you seem like the perfect person to write for me. Would you be interested in doing so? If you would, please email me at ELNCHEL@yahoo.com. Thanks so much and kudos on your website-it”s awesome!

    • Thank you for the offer Rachel. I shall certainly give it some serious thought – regardless your project is an extremely valuable one, and I wish you the very best of luck with it! 🙂

  5. Jina

    Hi Michelle, I’m 22 and was diagnosed with/underwent surgery for endo about six months ago now.. It’s been such a tough journey but blogs like yours have really helped me stay afloat. Thanks and keep up the great work 🙂

  6. Em

    Hi Michelle! I am 22 and I also got my laparoscopy that diagnosed me in 2010. I had undiagnosed severe pelvic pain for a year before I was diagnosed and was misdiagnosed several times. One doctor even told me that it was all in my head and that I was just suffering from bad anxiety. I completely understand the struggle. I currently struggle every single day with chronic pain and fatigue. I also have interstial cystitis, which doesn’t help. Thank you so so much for writing this blog! I feel like I am not alone now and I have hope. 🙂

    • Hi Em, thank you.

      I’ll never forget coming round from my first laparoscopy and my consultant saying “yes, you have endometriosis, I’ve seen it it’s not in your head”. I just remember saying bold as brass: “Yeah I know that, I’ve always known that.” 🙂

      Keep going Em, we’ve got to keep endometriosis (and other chronic pain) in the forefront of people’s minds, even if they think it’s only in ours.

  7. chelsea cloud

    Words can’t even express how I feel right now reason your website. Tears are pouring down my face because never in all these 10yrs I struggle have I heard ANYONE describe what I’ve been living with so crystal clearly.
    Thank you for your efforts in creating this site! Thank you for standin strong enough through your struggles to come out the other end and give people hope! Thank you for makin me feel like, for the first time in 10yrs, like I’m Not crazy and I’m Not alone!
    Thank you for being gracious enough to share and give!
    Thank you thank you thank you in so many ways you have…..well, you DO have an idea!
    I am an only child (sort of a loner and have few close friends), my mother suffered from the same but passed before she explained any of this to me, my father does what he can but Damn… For the first time in a long time I think I’m experiencing something close to hope 💚

    • Thank you Chelsea. I’m very touched by your comment, thank you for sharing your experience with me.

      Every person will this illness continues to inspire me – including you. 10 years is a phenomenal amount to time to endure this pain. Don’t detract from your own obvious and immense power and grace 🙂

  8. Maria

    I rarely read internet stories on endo as I find them depressing, but your positive attitude resonated with me. Like you, I challenge myself to find things to be positive about. On bad days, I tell myself I could be paralysed, or have MS… anything to get me out of bed. I also really value my work. Before endo I worked two jobs through uni and often pulled off 18 hour shifts. It has been so hard for me to accept I can’t push myself so hard anymore. I will definately keep an eye on your website. We are the same age, I often notice at the gynae and pain clinics that I am the only one under 50. The doctors assure me this isn’t the case but I feel like it is!

    • Hi Maria,

      Thank you for your positive comment. I sometimes feel the same way about personal endometriosis stories.

      I continue to find working an important part of managing my illness. I find the structure and distraction of work really important, and I work hard to keep finding new ways to stay motivated so I can keep working. It’s immensely hard, but I am very proud to have carved out a great career despite endometriosis. 🙂

  9. Jodi

    Hi Michelle,

    My name is Jodi and I’m 21 from Canada. I have just recently been diagnosed with endo and I have been told that I will have immense trouble conceiving because of the stage of the spreading. Being young yourself, how do you deal with the daunting fertility issues? My fiance and I are struggling with it, and we are considering trying to have babies way sooner than we had planned in order to actually HAVE babies before it’s “too late” (- my GN). Do you have any words of advice? People are so quick to say “you can adopt” before they realize how easily they are shrugging off the anxiety of this disease. Thank you for writing this blog. It is helping me come to terms with my illness.

    • Honestly Jodi, the only way I manage it to put my worries and fears about my future into the back of my mind, and I focus solely on improving my quality of life now. I’m fully prepared for the idea that I may not be able to have children. However I know it’s not that simple or tolerable an idea for everyone, and it’s very easy for others (particularly your loved ones) to suggest such detached ideas of how to proceed.

      People really don’t consider the immense emotional pain that endometriosis brings. I still occasionally find those well-meaning comments from others very hurtful because a great deal of importance is placed on a woman (rightly or wrongly) on her ability to have a child.

      I don’t have much advice to offer, and I know that the pressure is on you to rush a pregnancy a bit before you had planned but what I would say is that you need to make sure that you and your partner are comfortable and happy with that decision and that having a child is right for both of you. Never mind what other people think you should do. That said I know of many women who have had children and raised families despite endometriosis (and often because of it, similar to the reasons you give). I say this with a heavy heart, although the outcome was happy, the journey was long and often hard, I would talk to your doctor about their plans for your fertility and treatment (and emotional support to help you proceed).

      Best of luck to you, and much love.

  10. Emilee Penman

    Hello Michelle,
    My name is Emilee and I’m 20 years old. For the past two months I’ve been to countless doctors and have gone through many, many tests trying to figure out the reason for this random pain in my left side. Yesterday I had a laparascopy done and they found out I had some endometriosis, however they did not tell me very much about it because they were so set on the pain being caused from a torn muscle. Anyway, I was wondering if there was any way I could email you some questions I have because I feel like I have no knowledge about any of this. I found this blog so helpful and we just found it last night, so thank you for putting this out for those who need it. You’re a great person!

    • Hi Emilee, I’ll send you an email shortly. I should point out that I am not a health professional (merely someone else with endometriosis) so I can’t advise on any specific treatments as your doctor could. While you’re waiting for my email do have a think about if there’s any questions that you’re comfortable to share here that others could benefit from the answers of too.

  11. Emilee Penman

    A few of my questions I had were…
    When did you people realize the pain was there? Has endometriosis affected your eating habits at all? How long did it take you to get back into a “normal” routine like working and exercising?

    Thank you for all your help!

    • Sure, happy to answer those. I’ve dropped you an email too.

      The endometriosis pain started randomly one day. It was completely different to any other abdominal pain I had faced before. It was literally not there at all one day and there the next. When it first arrived it would appear in fits and starts, like a suddenly stabbing pain that would halt me in my tracks and then vanish a few moments later. It was scary, but sometimes weeks would go by where I wouldn’t feel it at all so I just lived with this and put it down to it just being another ache and pain. It wasn’t until the pain stayed with me all of one week without any breaks that I started to get scared, and started to seek help. That was over five years ago now and that’s when my endometriosis diagnosis story started. I wasn’t formally diagnosed with anything for another year.

      Eating habits? No not really. There are some minor changes. For example sometimes I suffer with nausea and can’t stomach eating at all. I now cycle every day as part of my pain management so I eat a lot more than I used to. I ate pretty well before endometriosis came along (I don’t drink, I have very little caffeine, I eat Vegan/Organic whenever I am able). I’m not prepared to change my diet anymore to try and improve my symptoms as I already do pretty well in that regard.

      I continued working with endometriosis throughout my diagnosis and treatment. So in part I think I was successful with this because I didn’t stop to be perfectly honest. I realised pretty quickly (for my personal circumstances at least) that working was an important pacing and motivating technique so I worked really hard through some really trying times to keep working full-time. I’m glad I did, the routine of working gave me the energy to ease exercise into my working life too. I think it was probably at least six months after my surgery before I had the headspace to start pain management in any real sense. I think there’s an expectation when you have treatment that that’ll sort you and the pain will go away, but over time you realise that that’s not the case and you take to very slowly start taking things into your own hands.

      • Oh I did forget one thing about diet & endometriosis. I can no longer drink anything after about 7 to 8pm. I suffer with bladder problems and if I drink anything too late. I can pretty much guarantee that I will be in agony by about 2am and have to get up and go to the bathroom. Pretty disruptive 😦

  12. Claire Bullimore

    You have a great blog. So sorry, I did put your post up and kept all your links to send people here but I should have written your name also. Thank you so much for a great post. I have added your name on now. 🙂

    • No problem at all, that’s all I ask 🙂 Oh, you have credited me in the wrong place though, I wrote the piece called “Guilt is an understandable side effect of chronic illness”.

  13. I think you are so brave to write about this illness. I had heard of it before, but really had no idea about any of the symptoms, how it must feel to live with it, and that there is no cure. I definitely think that it’s great that you’re raising awareness of endometriosis. I think that you have helped, and will help, many people who are going through the same experiences you are.
    Wishing you all the best!

    • Thank you. The best thing we can all do is talk about our illnesses more so that everyone benefits from the increased understanding that comes from this. Please spread the word.

  14. Siobhan

    Hi just found your website and have found it very helpfully. Good to know there are other people going through the same thing. Thank-you

  15. verity slater

    Thankyou thankyou thankyou. The best website I have come across regarding the condtion. I am 27 and pretty much the exact way you describe the illness is exactly how I feel! I’ve had symptoms for past few years but only now I am being taken seriously, I’ve recently had scans, blood tests, swabs etc etc and finally I’m being referred to a gynae and having a laparoscopy. I can’t wait for a diagnosis (I’m almost pretty sure in my mind I have endo!) But I am also prepared (thanks to you mostly!) That the diagnosis will also sadden me, that I will have to come to terms with a life-long condition with no cure. Just wanted to say thanks and your website has made a huge difference to me x verity x from Bristol

  16. Just found you this morning after Googling ‘how to deal with endometriosis pain’ and I’m, selfishly, glad to hear we have the same story. Looking forward to reading more about your daily llife and how I can make more changes to be happier and healthier living with this disease.

    • Hi Erin, nice to meet you. It’s possible to live with endometriosis but it’s not easy, hopefully you’ve found some ways to manage already, if not I’m happy to share – take a look at my past updates in the help section to get some ideas. Reading about it taking your quality of life into your own hands is the first step.

  17. Cammie

    Wow, your blog is amazing. It’s like a big hug from ladies who get it. While I’m coming to terms with the words “chronic” and “no cure”, so many of your posts hit home. Especially about managing your new life with limitations and fatigue. I get so tired and feel like I’m being anti-social when I schedule down days so I can recharge. I will read lots more here, so thanks for sharing your experiences. Lately, my pain has been in my hips and legs and so intense with almost nothing to relieve it. I’m sitting on my couch with icey hot patches to try to dull the pain. Thanks again for sharing all your insights and feelings. I thought I was the only one for a long time.

    • Thank you, you’re certainly not alone. All this information is hard to take in, but you’ll come to learn what you can still manage with endometriosis rather than mourning what you can no longer do quite as much.

  18. Hi, Michelle. You are very brave to have done most of all of this yourself. Congrats. I don’t know if my wife has the same thing or not, but want your opinion. She has had one female child, now 28, and my wife is 54 years old. Every day she has some sort of pain in lower left of her back, but sometimes in the stomach, some days aching bones, and pain in her left leg, etc. etc. She has been for ultrasounds, x-rays, gynecologists, regular doctors, naturalistic doctors, etc. and does not get any better. I read a lot of your information on your web-site and it sounds so much like my wife’s pain, even though there is a vast age difference. Please give me your thoughts. Thank you in advance. Concerned husband Mike

    • Hi Mike, given your concerns, I think the best thing you can do is take a list of the common symptoms of endometriosis (If you’re from the UK I rate the info on Endometriosis UK) to your doctor. It’s very common for a woman to see a lot of doctors and not find out what’s wrong. It takes an average of 8 years for someone to get diagnosed with endometriosis because it presents like a lot of different chronic and pelvic pains and can’t be easily identified from a scan, ultrasound or examination. A diagnosis is only really feasible during a laparoscopy (keyhole surgery). And endometriosis can cause problems for women of any age, all the way up to menopause (and for a very unlucky few) past menopause. It can’t hurt to pursue that line of enquiry with your healthcare professional Mike. I can’t advise on what your wife may or may not have, but your doctor can – with the right info and symptom reporting from both of you, and a big handful of persistence. Good luck.

  19. Vicki

    Hi Michelle,
    i just wanted to tell you how wonderful ir site is.
    I am 41 years old and was diagnosed with Endo when 24. Have had 2 laparoscopies over the years and tried nutrition diet,alternative therapies and eventually spent many years taking meds to stop my periods then at 35 started trying to conceive.traumatic and long attempts and obviously had to have periods!! 3 days off work a month etc etc.had ivf in 2010 and was blessed with our daughter Jessica in 2011.went back on meds to stop periods and all fine until jan this year (2014). Suddenly started feeling all the Endo symptoms again,despite taking meds.were on and off intially but since April full blown contraction like pain every day.managed at work with a hot water bottle until 5 weeks ago when became too unbearable.been signed off past 5weeks doped up on tramadol,co codamol,naproxen and anti sickness meds.every day a sruggle and the saddest part is i am unable to b a laughing,energetic mum to my 2 year old like i always have been.” mummy” is in bed a lot now. Am waiting to c consultant on 24th June to get on hysterectomy list as need an end to it.2 lots of precancerous cervical cell removals have also led me to this decision.
    have read that sometimes hysterectomies dont work but am hoping i will b one of the fortunate ones.
    the words you write could have been spoken from my own mouth and i am sure many people will gain comfort from them.i certainly have.
    vicki

    • Thank you for replying and taking the time to tell your story Vicki, I really appreciate your comment. It’s hard to find the time and energy to write some weeks so supportive comments help keep me going.

  20. Tiffany L

    I am so happy to have found this site. I’m sorry that you have had to go thru this but writing all about it helps all of us. I just was recently diagnosed and I’m trying to tolerate hormones. I’ve never been able to stay on birth control but I’m really trying this time. I’ve had undiagnosed nausea every day for over 5 years and I did find out that part of it was from food intolerances. So I can’t have gluten/dairy/eggs. Once I eliminated that I was feeling better but still had some nausea. Then I started having ovarian cysts that would rupture. That became more frequent and something docs said I should try hormones but I really couldn’t because it made me so depressed and sick. Well this year I finally got an ultrasound showing a 5 cm mass on my left ovary therefore declaring me with endo. I was googling about pain with endo because all day yesterday my pain was higher up than normal and just stabbing. I want to believe it’s the endo somehow and not like my appendix. Lol and voila, I find your blog. I’m 25 and there are days that I just want to become bitter and ask why is this happening to me at so young. I think the emotional trauma is worse for me at times than the pain. I’m getting my first surgery in July and hope it will help somewhat.
    I’ll try to read more of your blog in the mean time 🙂

    • Hi Tiffany, thank you for your comment. I hope you get some relief from your surgery. Please let me know if there’s any topic in particular that you’d find helpful.

  21. This has been a great read so thankyou.
    Im curently battling with my Gyn as I want another laparoscopy and she wants me to have the mirena instead.
    I have been trying unsuccessfully for 2 years to concieve so why would I want a contraceptive! I had an ultra sound which confirmed my endo coming back along with some chocolate cysts.
    How can I get someone to listen to me? I feel like giving up 😦

    • I’m going through similar problems at the moment myself Annabelle, a diagnosis of endometriosis only gives you certainty for so long I’m afraid. There’s widespread disbelief out there (or so it seems) about how endometriosis can recur, even with the best treatments and surgery available. It’s really important that you keep trying and continue to communicate your experience of pain to anyone who will listen to you. Here in the UK there are two care pathways for endometriosis one if someone is not interested in having children and one for women who do want to conceive, I think it’s very important that you continue to remind your doctors that you are in the latter category and expect your wishes to be taken into account.

  22. Cherry

    Hi Michelle,
    The comments from last night are correct you do write beautifully and very accurately.
    You are an inspiring young woman!

  23. Hey, I’ve been following your blog for quite awhile and love how you write (I’ve been know to send links to my friends and co-workers to explain things). I’ve just moved from Australia to the UK for year (specifically Durham, England). I was wondering, would you be up for meeting up sometime since we’re now on the same island? I’m assuming you’ll get my email through me commenting so shoot me an email if you’re interested (and don’t think I’m a complete weirdo.) Hope I haven’t completed freaked you out!

  24. Katherine

    Hi Michelle,

    I just wanted to let you know, I love your website. I live on Los Angeles, I would like to educate young women like us here in LA. I just don’t know where to start from. I will appreciate if you could guide me! Thank you. Take care!

  25. Michelle, do you know of any good Endo support groups or forums?

  26. Stela Todorovic

    Hi there Michelle,
    My name is Stela and I am a journalist in Australia. I am currently writing a feature piece on endometriosis in young women, trying to raise awareness of the condition and shed light on the suffering that so many go through. I hoping I could get in touch with you to ask a few questions regarding your experience. Please let me know the best way to get in touch, my email address is stela.todorovic@gmail.com and I am freelancing for Reportage Online.
    Alternatively, my twitter handle is Stela_Todorovic, if you’d like to DM me your details. Would be amazing to speak with you.

    • Hi Stela, thanks for getting in touch, I shall send you an email. 🙂

      • Michelle Lea

        Hello Michelle I am also a endo suffer and have been suffering for years until I had my first laparoscopy in nov 2013 and I was formally diagnosed at that time I had a total hysterectomy in June of this year but both of my ovaries were left my pain has improved but I’m never pain free I thought my nightmare was over but sometimes I think my endo is back!!! Do you know if that’s possible to come back after a hysterectomy?

  27. Jenn

    Hi! When I ran across your page and started reading it I felt like I could have written much of it myself! I’ve been through similar pain, frustration, and challenges with dealing with this thing. 😦 I noticed you use a TENS unit for pain relief? Where do you place the electrodes?

  28. Hello, so glad to read your blog; one of the best out there…I’d like to contact you privately if possible to ask some questions…

  29. Emily

    Thank you so much for your involvement and information! Some of us in the USA would like more recognition for Endo, as it is still so hard to reach a final diagnosis. Here is a recent white house petition I found! Please consider signing:

    https://petitions.whitehouse.gov/petition/recognize-endometriosis-disability-it-affects-1-10-women-whos-pain-need-be-managed-doctors-better-educated/pmLzvLg8

  30. Hi! I love your blog. You are doing a fantastic job and are a true inspiration. Great work! 😀 I have nominated you for the Premio Dardos Award. If you are interested in accepting the award, all of the details can be found here: https://painwarriors.wordpress.com/2015/04/07/premio-dardos-award/. I look forward to reading your future blog posts. Have a great day!

  31. Jo

    I have been off work since February, on the public wishing list in Australia to have my stage four endo removed and a bowel resection. I have chronic pain, which varies from slight to intense. This will be my third operation having now been suffering for over 20 years. This last round has been my most difficult as I am not on a Mirena due to trying unsuccessfully for a baby for the last three years. After I cried over a messy kitchen and argued with my husband this morning due to being overwhelmed with pain I found your blog. Thank you, I read everyone of your posts and the comments, and has got me out of reverse and at least into neutral again. Everything really resonated with me to how I feel mentally, socially and vocationally. Realising this is my new normal….was a big step for me. I look forward to reading more of your posts as I prepare to have surgery and manage my life moving forward.

  32. Sophie feeney

    This website is amazing. Thank you so much. I find it really difficult to explain my symptoms and feeling to people, but you have articulated this perfectly. Thank you so much x x

  33. Amy

    I have just found your website through all the very recent Guardian coverage. Thank you so much for all the information you have compiled here, what an absolute lifeline. I feel so angry and frustrated that there isn’t enough known about this disease and that women don’t always get listened to by GPs who are meant to help. My periods started at 11 and the pain became very bad at 15 onwards. Was only diagnosed with endo through infertility investigations when I turned 30, 6 years ago. The only things I have found to help are cranial osteopathy (you have to make sure you are seeing someone who is fully trained and hasn’t just done an 8 week course) and by radically altering my diet (I know that you are not so keen on diet changes but you sound pretty healthy as it is). So no red meat, no pork, diary, wheat, limit sugar, only organic chicken and organic eggs (I know, pretty boring) However, even though I’m not shaking, vomiting, having diarrhoea and the sweats, excruciating pain with delirium/ passing out every month I do still have pain that I know is not ‘normal’ period pain and for that reason, I will be contacting my GP to ask about progesterone only pill or perhaps Mirena. This is through reading info on you site so thank you, you (and the guardian) have given me the wake up call I needed to fully address the fact that I have endo and need further medical intervention xxx

  34. Liz

    Thank you for your site and letting me know that there are others out there! I have stage IV endometriosis (2 laparoscopic ablations and 2 excisions by an excision specialist. What I love about your page is that you realize and express that there is no cure! It’s so sad and frustrating to explain to others that this is my life and it’s not something I chose. But I try to make the best of it – I’ve lost many friends and relationships due to this debilitating disease. However, with the bad I try to see the good – my relationships I do have are stronger and more meaningful – I don’t have a high potential to have children but am open to adopting and just try my best to deal with the disease without having it ruin my life! Thank you again for sharing and I love your stories – wishing you a pain free holiday! Xoxo

  35. Maeve

    Words can’t explain how fantastic I think your blog is. Had a laparoscopy two days ago and I had to stay in hospital for the night . Have widespread endo in both ovaries, pelvis, uterus etc. I am so glad I found this site. For the support and it great to know that other woman understand the severity of having endometrious . Xxx

  36. Gisselle

    Thank you so much for sharing your story . I am in tears as i write this because i feel like finally i dont have to feel guilty when i miss work. I know my pain is real. Although i do not look so ill on the outside my internal pain is debilitating. I am in pain always and i feel exhausted from this chronic pain. I am scheduled for my first laparoscopy on June 6th. And i pray to God that it gives me some relief. All the best to you.

  37. Hi, I want to share my story as well as something that has worked for me, in case it can reach anyone else whom it might help.

    I don’t know if I have endometriosis or not. I’ve had very painful periods since I was 20 or so. (I’m 28 now.) I skip work for a day (or sometimes two) because of the pain. Every period, just as my flow would start, I’d get horrible pain all in my pelvis, and shooting down my legs, with nausea, sweating, anxiety.. I would shuffle around the house to take my mind off it, use heating pads, lay in bed and just writhe in pain. The worst of it lasted about 4 hours or so, after which Advil would actually help quite a bit. The worst thing though, I think, was the fear. I put in an incredible amount of effort between periods to try and stop the pain. I cleaned up my diet, exercised, tried to relax. I worked with my doctor and tried various vitamins and supplements. Long story short, nothing helped. I’d dread my period every month. And when it came, I’d go on sites like this reading about stories of other women, fearing I had endometriosis. Looking for any new tip I hadn’t tried yet. I felt so guilty about taking time off. I had a hard time adequately describing the amount of pain to my doctor, to the point where my wife insisted she come in with me and explain how bad it really was. I sometimes told myself it wasn’t a big deal, but it had such an impact on my whole life. It still does. It was basically a traumatic experience for me each month, that I knew would happen again the next.

    4 months ago or so, I was doing physical therapy for my poor posture. I have this book that describes trigger point therapy, and I’d been using it on my neck with a lot of success. One day I was thumbing through other areas of the book, and came across something that caught my eye. That trigger points in the pelvic area can cause menstrual cramps. I thought what the hell, and searched for some of the ones described in the book. I found some, for sure. Pushing on them felt a lot like some of my period pain, which was mind blowing to me. And I worked on them, and made some progress. I also started meditating, which was sort of coincidental, but ended up helping a lot with the mental aspect.

    I have since found that relaxing these muscles was the key for me all along. Every period was the same: I’d feel the pain, and I would tense up around it. I would tense up my legs especially, so much so that it’s actually still tough to get myself to stop. (So that’s where the meditation helped: in allowing me to feel the pain without tensing up around it.) Even just doing that was a big help. And just working on those trigger points. I almost can’t believe how much of an effect it has had on my periods. Especially because so much of the pain seemed gastrointestinal.

    I still take the day off, and lay in bed, but it’s so much more pleasant. I actually try to relax as much as possible and that combined with a couple of Advil makes it so that I feel almost no pain. Nothing like it was, anyway. I try to keep my body fairly long and relaxed. I still have a lot of fear that this is too good to be true, and that the pain will come back, but so far it’s just better each month.

    I don’t know if this will work for anyone else, but I really want to just put it out there in case it does. I have so much empathy and understanding for anyone going through chronic pain, and I’m not trying to suggest that this is a cure. I know I became fed up with people’s suggestions about how to reduce my pain, after so many of them didn’t work. It’s fairly easy to try the trigger points out though, and if they can recreate your pain it may be of use to you.

    With love,

    Cristina

  38. Tahlia

    Hi, I’ve just recently been diagnosed with endometriosis and will need to have further surgery and insertion of a mirena. I really appreciated your insight and very down to earth, reasonable and honest approach. Idid think I would be cured from pain instantly and I’d be back in action a few weeks after my next surgery. Thanks to your story I now have a more reasonable approach. It might take a bit longer but knowing to endure all this for Hope in the end is definately comforting. Can I ask how do you know what stage of endometriosis you have? And what are the stages? Is it better I ask my surgeon / specialists about this?
    Again I really appreciate your blog and your insight it really has given me a better idea of what to expect.
    Thank you so much. Love from Australia

  39. Hi, thank you for such a great informative blog. I am not diagnosed but have been suffering pain which became chronic four years ago. I’ve always suffered with bad period pains. I had a laparoscopy in 2014 where they found no ‘live’ endo but they found adhesions. Some of which had adhered my bladder to my uterus. He said it was possibly from an std (to be clear I’ve never had an std). Anyway on and off lots of different pills which offered temporarily relief. Back to the gyno after i had to come off the combiend pill due to migraines, who told me he couldnt help and referred me to a bladdr specialist who found no issues. I was put on the implant which really helped but only for a few months and then the pain came back. I went back to the gyocologist who actually said ‘I’m not sure what you want me to do’. I just said i didn’t want to live with this, with everyday being a struggle. I can’t sleep properly and every day is so difficult to get up and go to work. I have to take codeine and naproxen and wear heat pads all day. I have pain for around three weeks off the month with no pattern. She said its probably endo but they can be difficult to locate sometimes. I feel lost and fed up. Has any else had similar experiences. Im just so fed up!

  40. Rachael

    Hi Michelle,

    Thankyou for sharing. Reading this makes me feel like I am not alone.. which it is very easy to feel sometimes living with chronic pain and what nobody can see. I have suffered with endometriosis for years now but the past year have been having pain in exactly the same areas that you have indicated in purple and I too have hypermobility syndrome. I have been wondering what this pain is and fearing that I have something seriously wrong with my heart or lungs or ribs or something else!! I didnt realise JHS could cause strange pains in these areas. It’s not something I have been given any information about and it reassures me that other people with JHS experience this. Do you know why JHS causes pain here?

    Thanks,

    Rachael

  41. Hi Michelle, I’ve featured your blog in a post of mine where I talk about art and coming to terms with Endometriosis. I’d love it if you’d have a read and perhaps throw a tweet. The more awareness the better! Thanks for your wonderful blog! https://cjwaterfieldart.wordpress.com/2017/09/05/painting-and-endometriosis/

Leave a reply if you found this helpful

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

Twitter

  • I'm taking a break from here until my family in Dominica are better. Things are still really bad. 1 week ago
  • My friends, an urgent plea from my family. They are starving and homeless after Hurricane Maria in Dominica bbc.in/2ypMPOn 3 weeks ago
  • Going to be quiet here for a while. my family are unaccounted for in Dominica due to Hurricane Maria. 😣 3 weeks ago
%d bloggers like this: