Endometriosis immune system problems are making me miserable

After about five years with endometriosis my immune system feels pretty weak. Historically put this down to my body having to constantly fight the effects of chronic pain and fatigue, but as time has gone on, and each year I break my own record for the number of colds caught, I’ve started to wonder if there was more to my colds than plain bad luck.

If you practice good hygiene, have a good diet, exercise and avoid activities associated with higher cold risks (e.g. smoking) why does it feel like we’ve gotten the short end of the stick when it comes to my immune system and endometriosis?

Does endometriosis lower your immune system?

In my experience it undoubtedly does. Everyone I speak to with endometriosis says the same thing. Our colds seem worse than before we had endometriosis, and come more often and stay with us longer.

How do I know for sure? I have an extensive pain and illness diary, I’ve written down all my bouts of illness (and all my sick days) for around eight years now, including every sniff, sniffle and ache. I’m getting colds more regularly, and I get at least one more each year than the previous year.

I’ve already written about how frustrating becoming ill when you’re already ill can be, and I’ve even looked at all the ways you can prevent more seasonal illness. I always get over each cold, but the memory of it stays with me for a long time, I dread getting a cold more than anything else. I’m becoming obsessive when it comes to staying well, and with good reason – once I catch one cold, I’m run down even more, and I’m likely to catch another one in a couple of months or around two to three weeks in the winter season.

Why does endometriosis affect our immune system?

Our immune systems are obviously still working or we’d be very seriously ill, but living with endometriosis has definitely lowered my immune system. Prior to endometriosis I could work through a cold, now the common cold gives me a fever, a temperature and completely incapacitates me for up to a week.

So while already feeling pretty run down my body is more susceptible to illness, and I’m weighed down with all the additional misery and regret that comes with having another ache, pain and stress added onto my already tired body.

What’s also overlooked is that many of us are on hormonal treatments for endometriosis, some of us many even be on treatments to entirely stop our periods, and this mimics preganancy. Guess what? Pregnant women are more susceptible to bouts of illness (because their immune system changes to help look after the baby) and annoyingly, we seem to be proxy to this effect too. When you start to realise that endometriosis puts us in two risk groups for getting the common cold and increased risk of viruses (long-term illness and lower immunity), it’s no wonder that we all seem to get ill at the drop of a hat.

How can we combat our low immune systems?

There’s no easy answer to this. Frustratingly the common cold (alongside chronic fatigue) is the aspect of endometriosis that I struggle with the most. Usually we’re doing everything that we can to combat the common cold, we’re also trying to manage endometriosis too, and it’s hard.

I guarantee you’re doing most of this already, and I’m sorry:

  • Avoid public transport (if you’re green like me, I do this by cycling) and if you must use it don’t touch anything (especially pockets on the back of seats)
  • Stay away from anyone who is ill (and remind everyone you know that you have lowered immunity)
  • Wash your hands regularly (alcohol gel them too)
  • Avoid touching anything in public (doors, handrails, lift buttons)
  • Have a good, well-balanced diet
  • Exercise regularly
  • Don’t share items (like pens, computers) clean your hands after doing so
  • Get as much rest as you can, try not to work when sick (avoid touching the printer at work too)
  • Avoid smoking
  • Get plenty of good-quality sleep

GPs don’t understand endometriosis and its effects

Everyone with endometriosis knows about immunity problems already, but start to talk about it to a doctor or other health professional and most think that I am a hypercondriac. As endometriosis patients we’re still not offered routine flu vaccinations and this is something you have to argue for individually. I think in time this will change though. There isn’t much about endometriosis that is understood fully by the wider medical world. We’re still not sure of what causes it, so we can’t be completely sure what other, long term effects it has.

There’s not a lot of peer-reviewed science when it comes to the immune system and endometriosis, it’s all speculation and anecdotea online. However, I know endometriosis has compromised my immunity to colds and other viruses, and if you’re reading this you probably know it too. It’s an instinct, as keen and clear to me as my pain was when everyone around me was telling me it wasn’t real.

I expect the scientific world will catch up with to this detail in the future. Perhaps (as some have speculated) endometriosis’ possible auto-immune disease status will be clarified, maybe with time this will be acknowledged as a wide symptom of the illness, or eventually, the long term effects of the current treatments will be realised.

I don’t need a doctor to tell me the facts about my lowered immunity, but I do expect us all as patients to talk about this aspect of our illness more to get it wider acknowledged.

21 responses to “Endometriosis immune system problems are making me miserable

  1. Kerstin Esbjornsson

    Dear Michelle
    Many thanks for your blogs. Very helpful, sensitive and supportive. There are more clinical studies out there where endometriosis sufferers have been found to suffer from other auto-immune disorders to a higher degree than the general population. See for example “High rate of allergies among women with endometriosis” http://www.ncbi.nlm.nih.gov/pubmed/22369407
    And allergic people catch more colds etc than the general population – a fact that both my children and I know all too well. You can see a number of reference works also on PubMed trying to tie in published material on endometriosis and autoimmune disease/ autoimmune deficiencies.

    By the way, while you’re in PubMed why not check out Green Tea – for example: http://www.ncbi.nlm.nih.gov/pubmed/22948799 “Prodrug of green tea epigallocatechin-3-gallate (Pro-EGCG) as a potent anti-angiogenesis agent for endometriosis in mice.” I have put myself through a ‘home-made trial’ of 4-5 cups/day 5 days/week. And it has been my saviour since I started this summer. It isn’t a cure but it has helped more even than gentle exercise, the correct diet, naproxen, codein and all the rest we have to take to cope and work. It took 2 weeks to start working and if i stopped drinking green tea the symptoms start worsening again back to previous levels within about 7-10 days. As far as I can gather the catechin/EGCG in green tea works by inhibiting the unrestricted growth of blood vessels that supply (the nutrients to) the endo growths. I am now also on GnRH prostap injections – so no: green tea isn’t a cure but it has helped me significantly with my pain and inflammatory levels.
    Looking forward to your blogs/e-mails
    Many, many thanks
    Kind Regards

    • Thank you so much Kerstin, sorry it’s taken me so long to reply.

      Appreciate you taking the time to dig out some more information. Everything you’ve said makes total sense, in fact I was aware of the endometriosis autoimmune disease debate too, perhaps it’s something that I will return to in the future in more detail. The allergy link is well known, but there’s not enough action out there to help or relieve people of their symptoms for this and I don’t think there will be until someone in the medical community definitively joins the dots.

      Glad you enjoy my updates too 🙂

  2. I have had great success with a combination of homeopathic remedies. The second I feel the slightest bit icky … Cold or flu wise, I take braggs apple cider vinegar and then I take wheat grass . I also do this if I have been exposed to someone ill. If I am feeling particularly icky I repeat this process 5 or more times a day. If it still persists I follow with coldcalm or for flu symptoms of body aches and nausea I take occiccollum ( spelling that wrong) but it is a homeo flu remedy that you can get at most stores and can be found in the vicinity of the ever popular coldcalm. I increase my water intake too.

    I completely agree with the immune system thing. I just have found something that works for me, and the quicker I start the regiment the better, sometimes I feel ill for a day sometimes it just never takes hold, if I’m quick.

    One thing I haven’t been able to beat is my allergies. I know I have a much lower immune system because my cat allergy is through the roof. I used to be able to cuddle with my kitty and get no symptoms, now I have to be very careful of my poor kitty. He makes my eyes swell almost immediately!

    I wish doctors knew more, had more time, and then used it to research what is going on. I wish endo was a specific “specialty” registered with the medical board. I wish there were answers. I am in the throws of battling doctors and insurance companies….. It is so emotionally frustrating.

    • Hi Laura, I’m glad you’ve found something that works for you, I obviously haven’t yet and it’s particularly frustrating as I mentioned because I live a pretty healthy lifestyle.

  3. Denise Heimstead

    Hello Michelle, Kerstin and Laura,
    I noticed after my pain became chronic (after about ten years) is when I started getting sick more. Obviously by this point was extremely depressed and there is plenty of research showing a link between depression and lowered immune response, and I also would believe that chronic pain being a major stress to the body would also play a role. I have seen references to the immune system in many articles about endometriosis, so I did use the resources I have at work (I work at a University Library) and complied a list of citations for articles that I think you ladies will find compelling. Some I am sure you can get in full-text online, but some you may have trouble getting. I am happy to email any of you pdf’s of any of the article citations I have listed below. Believe it or not I was selective, but It is still quite a lengthy list as I wanted to include a variety of information related to endometriosis and the immune system. Some articles do discuss autoimmune diseases as well.

    In terms of boosting immunity, VITAMIN D!! I also included links to articles for that too, including some that specifically relate to endo. I love doing research and love sharing resources especially when it comes to endo because I think the more you can learn the better you can help yourself and know more about what to expect in your treatment. It IS really amazing at how ignorant doctors are when it comes to treating endo. How can a dr. claim to treat endo patients when they aren’t even remotely aware of the latest information? One of my gynecologists, the one who did my hysterectomy said there was no way I could still be having endo pain after my hysterectomy because I had had a hysterectomy. He said I needed a probiotic.

    Here you go: Happy Researching. My name is Denise and here is my email if you are having trouble finding any of these in full text and are interested in getting them. Citations with brackets around them are NOT in English.

    I wish all you ladies well in your fight. By the way, Michelle I love reading you blog.

    Baka, S., Frangou-Plemenou, M., Panagiotopoulou, E., Makrakis, E., Kaltsakas, G., Hassiakos, D., & Kondi-Pafiti, A. (2011). The expression of human leukocyte antigens class I and II in women with endometriosis or adenomyosis. Gynecological Endocrinology, 27(6), 419-424. doi:10.3109/09513590.2010.495429

    Barrier, B. (2010). Immunology of endometriosis. Clinical Obstetrics & Gynecology, 53(2), 397-402. doi:10.1097/GRF.0b013e3181db7c33

    Cakmak H, Guzeloglu-Kayisli O, Kayisli UA, Arici A: Immune endocrine interactions in endometriosis. Front Biosci (Elite Ed) 2009; 1:429–443.

    Christodoulakos G, Augoulea A, Lambrinoudaki I, Sioulas V, Creatsas G: Pathogenesis of endometriosis: the role of defective ‘immunosurveillance’. Eur J Contracept Reprod Health Care 2007; 12:194–202.

    Eisenberg, V. H., Zolti, M., & Soriano, D. (2012). Is there an association between autoimmunity and endometriosis?. Autoimmunity Reviews, 11(11), 806-814. doi:10.1016/j.autrev.2012.01.005

    Gleicher, N. (1994). The role of humoral immunity in endometriosis. Acta Obstetricia Et Gynecologica Scandinavica. Supplement, 15915-17.

    Gleicher, N. (1995). Immune dysfunction–a potential target for treatment in endometriosis. British Journal Of Obstetrics And Gynaecology, 102 Suppl 124-7.

    Herington, J., Bruner-Tran, K., Lucas, J., & Osteen, K. (2011). Immune interactions in endometriosis. Expert Review Of Clinical Immunology, 7(5), 611-626. doi:10.1586/eci.11.53

    Ho HN, Wu MY, Yang YS: Peritoneal cellular immunity and endometriosis. Am J Reprod Immunol 1997; 38:400–412.

    Kyama CM, Debrock S, Mwenda JM, D’Hooghe TM: Potential involvement of the immune system in the development of endometriosis. Reprod Biol Endocrinol 2003; 1:123.

    Matarese G, De Placido G, Nikas Y, Alviggi C. (2003). Pathogenesis of endometriosis: natural immunity dysfunction or autoimmune disease? Trends Mol Med. 9(5):223-8.

    Olovsson, M. (2011). Immunological Aspects of Endometriosis: An Update. American Journal Of Reproductive Immunology, 66101-104. doi:10.1111/j.16000897.2011.01045.x

    Tanaka, E., Sendo, F., Kawagoe, S., & Hiroi, M. (1992). Decreased natural killer cell activity in women with endometriosis. Gynecologic And Obstetric Investigation, 34(1), 27-30.


    Abbas, Manal A., Mutasem O. Taha, Ahmad M. Disi, and Maha Shomaf. 2013. “Regression of endometrial implants treated with vitamin D3 in a rat model of endometriosis.” European Journal Of Pharmacology 715, no. 1-3: 72-75. Academic Search Complete, EBSCOhost (accessed January 10, 2014).

    Anagnostis, P., Karras, S., & Goulis, D. (2013). Vitamin D in human reproduction: a narrative review. International Journal Of Clinical Practice, 67(3), 225-235. doi:10.1111/ijcp.12031

    Ghosn, J., & Viard, J. (2013). [Vitamin D and infectious diseases]. Presse Médicale (Paris, France: 1983), 42(10), 1371-1376. doi:10.1016/j.lpm.2013.07.009

    Hewison, M. (2012). An update on vitamin D and human immunity. Clinical Endocrinology, 76(3), 315-325. doi:10.1111/j.1365-2265.2011.04261.x

    Lang, P. P., Samaras, N. N., Samaras, D. D., & Aspinall, R. R. (2013). How important is vitamin D in preventing infections?. Osteoporosis International, 24(5), 1537-1553. doi:10.1007/s00198-012-2204-6

    Sayegh, L., Fuleihan, G., & Nassar, A. (2014). Vitamin D in endometriosis: A causative or confounding factor?. Metabolism: Clinical And Experimental, 63(1), 32-41. doi:10.1016/j.metabol.2013.09.012

    Shaik-Dasthagirisaheb, Y., Varvara, G., Murmura, G., Saggini, A., Caraffa, A., Antinolfi, P., & … Pandolfi, F. (2013). Role of vitamins D, E and C in immunity and inflammation. Journal Of Biological Regulators And Homeostatic Agents, 27(2), 291-295.

    Tamer, G., & Mesçi, B. (2013). Role of Vitamin D in the Immune System. Turkish Journal Of Endocrinology & Metabolism, 17(1), 5-7.

    • Kerstin Esbjornsson

      Dear Denise

      Fabulous! thank you very much indeed – plenty of reading material for the ‘dark winter nights’ ahead. Have grown up in an old university town and learned to use the University Library (of Lund Uni, Sweden) early on whilst still at secondary school (they never checked your student id there). I did study myself but law, business & economics, never medicine. However with a pharmacist mother I still enjoyed some of the medical periodicals and in trying to read on up on this I have since also noticed the convergence of autoimmunity as an issue in respect of endometriosis.
      Another autoimmune disease RA (Rheumathoid Arthritis) of which incidence has been linked to lower level of UV-B rays over the year/years/lifetime – see http://www.ncbi.nlm.nih.gov/pubmed/23380431. In other words Vitamin D. I completely agree and feel myself a lot healthier and have lower endo pain levels during the later summer months (when vitamin D has built up a bit..). I have even contemplated using an old fashioned sunbed.. as we already eat enough fish and take the vitamin D & calcium supplements in our family.

      Laura – have you ever tried nettle & nettle tea for your allergies? Nettle is a natural antihistamin and is milder than chamomile. With chamomile, you also run the risk of triggering new allergies/hayfever during its flowering season whereas nettle very rarely would trigger any allergies in itself. There is a fab book by the former chief of USDA Medicinal Plant Laboratory Dr James A Duke : The Green Pharmacy. Not homeopathy but might be of interest as he is using knowledge of the healing chemical constituents of plants and gives a more holistic insight into how to use plants as food that heal. With allergies a very cautious approach such as homeopathy is always worthwhile but personally I have always found knowing more about herbal remedies helpful. I used nettle when I was at my wits end with a toddler whose ezcema just wouldn’t budge – ezcema cleared after 2 weeks on 1/2 cup of infused weak nettle tea/day (and came back when I stopped..). I also avoid as much pesticides & air fresheners as possible in our food and environment – both for my children and for myself as we are all suffering from some allergies or another..

      With allergies and when talking to other family members about it, I have found that in my family (trying to speak to as many cousins, aunties, nieces & nephews, my childrens’ second cousins etc, etc..) that we all appear to have worse periods for new allergies or recurrent allergies as:
      – babies/young children
      – puberty including pre-puberty & late puberty
      – for women especially: 40-50
      These are all ages when our hormone levels change. Not only did I develop endometriosis as a 46-year old 2.5 years ago (too much estrogen) but my allergies have become a lot worse. Hormones are closely linked and very similar to immune cytokines – sometimes they can’t tell the difference.. I am sure there is a link. Sleep well – hope I haven’t kept you – I’ve have written far too much.
      Take care

    • Amazing Denise thank you, this is exactly what I am after. I have a lot of reading to do.

  4. Denise Heimstead

    I have some more information for you ladies.
    I was talking to a friend of mine who has Chronic Pelvic Pain but doesn’t have ENDO or adhesions. She just got diagnosed with Factor 5 blood disorder. When she was talking to her chiropractor about it, he mentioned that he had a client who was getting treated for Factor 5 with Vitamin E supplementation. Apparently, this woman had very heavy periods and chronic pelvic pain. Once she started the VIT E therapy her periods normalized and her pelvic pain either lessened or went away, I can’t say for sure which as I don’t remember what my friend said. Ironically, I started a VIT E supplement about two weeks ago just to see if it would help me feel better in general and this past week, I noticed that my rectal pain and pelvic pain was way better, which is interesting because I was very stressed out at work, wasn’t sleeping well and was pretty depressed. I can’t say for sure, but maybe it was the Vit E. I looked it up and found this article. I was able to download it through the library’s database but haven’t read it yet. I thought I would pass this along to you ladies too since we all have this in common. If it even helps a little that’s awesome (and without the side effects of medication). If any of you have already tried this or do try it, I would like some feedback. Michelle, I have the pdf file and am happy to post it but not sure if I can post pdf’s to your blog. I am happy to email it to you as well to save the time of you having to look for it in full-text online.

    I also wanted to say that I, too, started getting sick a lot more when my pain became chronic. I know that people with depression often have more illnesses, which I already suffered from, but you can imagine how much worse it got when the pain became chronic, but I often wonder if the chronic pain is contributing to the increased illnesses. I get a lot of respiratory illnesses. I had pneumonia in Sept and have had a few other resp. infections since then. Luckily, I don’t get the flu, although the chronic fatigue sure can feel like it. Has this been your experiences too?

    Kind Regards,

    Denise Heimstead

  5. Ashley

    Hi Michelle,

    Thank you for sharing about your increased seseptibility to illness.

    I was never sick a day in my life before endo. Never missed a day of work or even school growing up. Now with endo I get every single cold, flu, respiratory infection, etc, etc, that comes down the pike.

    I was just telling my sister how humiliating it is to constantly be bowing out sick when I was never the sick one before. Your shared experience at least helps my frequent sickness feel less humiliating.

    • It’s not something you have to be humiliated by anymore Ashley, but we do have to start talking about this aspect of endometriosis more because it’s not something people seem prepared to acknowledge.

  6. Hi there,

    you are absolutely right and the science is there to back us up. Women with endometriosis have been found to have altered immune systems. Without going to much into it basically our B and T cells are functioning at a much lower level than normal -meaning that our initial immune barrier is underfunctioning. So we are more likely to pick up anything that’s going, virus wise.


  7. Denise Heimstead

    I experienced the same thing. I was sick all the time it seemed like. The interesting thing though, is I had excision surgery August 2015, which was successful is remedying 99% of the pain i was experiencing chronically, and since then I don’t think I have been sick one time, not even a cold.

  8. Louise burns

    I am same. At the minute I have chest infection cold sweats cough. Am as always wipef out. No one understands.
    Work in civil service have a 2 year written warning for sick. Am waiting on 4th surgery with bowel surgeon and gynecological. How are we supposed to cope when work know your circumstances and still put pressure on. I have been of 3 times total 22 days. Now am using leave. I have 12 days to do me until end january 2017.
    Crazey. But who cares.


    • I’ve been in that position before Louise, I’m so sorry to hear that is the case for you. Does your employer recognise your illness as a disability, you may be able to argue that you protection under the equality act. If you’re in the UK speak to the free Citizen’s Advice Bureau service to see if your local group can help you with this issue.

  9. mel miller

    Hi, ive suffered endo for over 20 years and im riddled with it, its also in my bowel, abdominal cavity and who knows where else but I almost never catch any colds or flus. I attribute this to my green juicing, I drink 2 scooners a day. (Kale, silverbeet, spinach, chard, parsley..anything green mixed with ginger and lemon) I also experienced decrease in pain and decreased heavy bleeding within a month of starting green juicing. I decided to investigate further and found that green juicing is also recommended for boosting the endocrine system, which is connected with the immune system. Ive started looking into treating my endo by treating my endocrine system and its been so effective that im beginning to believe that endo is a disease of the endocrine system. All these years ive been seeing gynos and endo specialists and now im starting to think ive been treating the symtoms rather than the cause. Has anyone else experienced this?

  10. Thank you for writing about this. I really appreciate it, as I’m currently dealing with my third cold of the season. A couple months ago (end of September-beginning of October) I got my first cold, it lasted about a week and made it so that I could barely leave my room for the first couple days of it. My second cold last two weeks this month, November, and i was so miserable. Thankfully I don’t have a full time job, and I’m working with a friend of mine to help with her kids, so I’m able to take as much time as I need, although I feel so bad for missing so much time, and not being able to help. That cold was the worst, it sucked so bad. Then I was feeling pretty normal for about 3 or 4 days, and now guess what, I’m sick again! My immune system seems shot to hell and it’s so frustrating and makes me feel so helpless. It’s nice to know I’m not the only one who had Endometriosis that is experiencing the effects of having a weaker immune system. Thanks!

  11. Samone Coats

    This was a well-written article and also a very true one. My immune system is very weak because of Endometriosis. I have to get the flu shot every year. Although, I still get upper respiratory and sinus infections a few times out the year.

    I try my best not to take public transport(The Metro) because every time I do, I become very very ill.

    This week I was diagnosed with Shingles, a sinus infections, and my monthly occurred. Needless to say, my body has been working in over drive.

    I am only 31 years old and I used to think Shingles were reserved for people 60 and older. Boy was I wrong and I believe my compromised immune system(from Endo) plays a huge part.

    The Shingles pain is like none I’ve experienced before. Shingles is a virus that causes sharp, excruciating muscle and nerve pain. Those pains have been the worse. Imagine having a Charlie-Horse but it lasting for 10-15 minutes. That what the spasms and nerve pain feel like.

    I hope one day there will be more advancements in the medical world regarding Endometriosis pain and immune issues. Perhaps, they will finally except it as an Auto-immune diease.

  12. TJ Kelsey

    I was diagnosed with endo level 4 widespread 3 years ago. constant ER visits because of the pain. I had an excision surgery and all the pain went away. But my immune system was worse. Chronic fatigue set in. I thought was due to stress and pain. I then had a tonsil and gallbladder removed the next year. finally a year later and about 50 Dr.s later, someone checked my immune system. IGG levels. It was low, and I was finally diagnosed with a primary immune deficiency, non-familial hypogammaglobulanemia. Then I developed non-allergic asthma. 3 years before being diagnosed with endo, I started getting extremely sensitive to chemicals, fumes, etc. I don’t know what came first, the chicken or the egg. But life has been pretty rough. I’m also the healthiest eater of anyone I know and have been for over 10 years. I’m pretty sure there is a connection, but no Dr. is interested in this conversation

  13. Faye Duval

    It is so reassuring to read others’ accounts of the same kind of experience I have with regards to getting ill all the time. I am currently having a week off for yet another respiratory infection. I am training to be a teacher and hate having to call in sick – the associated guilt then just makes you feel even worse! I am just hoping that the menopause in around 10 years might put an end to what feels like a lifetime of illness 😔

  14. Nina

    I’ve had endometriosis for well over 15 years. Fainting through severe pain in classes at school, being found in the men’s loo all confused and draped round a filthy toilet seat, dreadful diarrhoea and sickness (at the same time) even tearing my own hair out from the pain and cramps (I found it in clumps by the loo the next morning) I have had several operations to remove cysts, lesions and even one life and death ectopic pregnancy, unplanned, but luckily for me I’ve never wanted children so have been through far less emotionally than those who do want to start a family. It’s all over my pelvic region, bowel, pouch of Douglas and ovaries. Most GP’s do not understand, even some surgeons. Mine told me “he couldn’t feel any” during an internal, then opened me up to find it scattered all over…..I’ve been on the pill to suppress things for years, but had to come off when I had 2 or 3 ocular migraines. I also (all my life) have had severe allergies to cats, house dust, jewellery, cleansers, washing powders. I can’t now travel abroad unless I take my own pillowcases as I break out in hives over hotel laundry powders etc. I had someone make me a cotton sleep suit to avoid contact dermatitis from strange bed sheets. Yes, very sexy…..not…… Despite eating a mega healthy diet, I seem to pick up every cold going these days and even had mumps last year at the age of 45. That did hurt! There must be more research done into this crippling and chronic disease. We all know the hell’ish pain of evil cramps, erratic bowel movements and painful sex. But what about the more far reaching physiological effects that are simply confusing and scary on top of what we all have been and are still going through. Reading blogs helps us feel we are not alone, but cancelled plans, annoying allergies, zero sex drive, blood-flooded trousers and car seats, debilitating pain, wasted time spent in bed, friends and family who think I just have bad period pain all contribute to make this disease even more isolating.

  15. Well said! One of the realities our friends, colleagues, acquaintances and clients need to understand and respect is that we are already extremely sick and incapacitated from endo for about 1/4 to a 1/3 of our lives. Add in colds, flus, sore throats and everything else being passed around that we catch more easily, suffer with more severely and take longer to fight off and that means I’m sick for about 3/4 of my life, which is too much, especially while paying high rent in an expensive city, struggling to pay off student loans. I need the people I choose to have in my life to respect my limits and health and refrain from knowingly infecting me when they are contagious. I’m in my forties and I’ve been tired for most of my life from my autoimmune condition. I’m grateful for this supportive site and also learning to take my power back, to only agree to plans and people that I truly want in my life. I still have to cancel even those plans about 50% of the time, but more and more I am stepping into my right to boundaries and to only give my energy, health and time to my top priorities. One of the biggest struggles I have is with people expecting me to get better or find a quick fix or be able to reschedule and follow through with cancelled plans, as though next month won’t bring the same struggles and limits. In addition to struggling with severe pain beyond our control, being mistreated by employers for needing to cancel when we can’t move from the pain, etc. and worrying about how to survive financially with this reality, an ongoing stress I try to curtail is essentially with unrealistic and controlling expectations of others wanting me to commit to more than I realistically can. Anyway, my compassion for everyone going through this unpredictable, draining and unrecognized struggle. Be kind to yourselves. Cut whatever cords you need to. And know you have every right to define for yourself how to allocate your healthy hours.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

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