Endometriosis and the impact of delayed diagnosis.

It’s now been three and a half years since my endometriosis diagnosis. A lot has happened since that momentous day- two surgeries, a mental breakdown, a new job, difficult decisions, diet experimentation, a whole new community of friends, and falling pregnant to name but a few.

I am now doing relatively well- thriving for the most part in fact. 2017 was the first time in almost two decades where I can say I had times where I felt truly happy, content, and well. I can see why it is tempting therefore, for people to think that everything is OK now and I have put the trauma of diagnostic struggles behind me. That I have risen above it and moved on. That I was tenacious and refused to let my poor health defeat me.

But the fourteen years it took for me to be correctly diagnosis still shape every aspect of my life and have affected me very deeply. I am still angry about this. And I’m angry that it still takes 7.5 years on average for women to be diagnosed with this often debilitating disease, because this is completely unacceptable in 2017 quite frankly.


So let me spell it out, for those who cannot read between the lines or see behind often forced smiles what a delayed diagnosis really means and why it matters…

-Delayed diagnosis means that I’ve been left with levels of pain, fatigue, and mental trauma which still overwhelm and consume me at times. These days, I’m better at hiding it, but this causes its own hurt.

-Delayed diagnosis meant that I became progressively more ill each year as the disease spread around my body to take hold of organs such as bowel, bladder, and diaphragm. All without explanation or it was put down to ‘stress’. I spent at least five years convinced I was dying, which had a pretty negative impact on my productivity unsurprisingly.

-Delayed diagnosis meant having to watch all of my friends graduate their PhDs successfully while I am left behind, too traumatized and exhausted to finish something I’ve worked so hard for.

-Delayed diagnosis means that I’ve had to make huge compromises with my career to be able to cope with the limited energy I have available to me each day. And to live with the knowledge that I could and should be doing more.

-Delayed diagnosis means that I suffered the pain and heartbreak of years of infertility.

-Delayed diagnosis means that I earn less money than I would have done if I were well.

-Delayed diagnosis means that I am not able to always be the wife/ daughter/ friend that I want to be, and living with the guilt of this. Sometimes I just hide away and put myself first just to survive.

-Delayed diagnosis means I lack confidence in my body and deeply distrust medical professionals.

-Delayed diagnosis means wondering ‘what if things had been different’ all the time. If my GP had listened to me as a teenager. If I wasn’t constantly misdiagnosed and fobbed off as an adult. If I didn’t spend the ages of 11 to 25 in excruciating pain. If just one person had told me that period pain like mine wasn’t normal.

-Delayed diagnosis means never having closure. Nobody will ever apologies or be held accountable for the terrible time I went through or be able to put things right. Most of the people and professionals I encountered will never even know my story, or why it matters.

And that’s just for me. More broadly, delayed diagnosis of endometriosis means all these things as well as and lost working/ educational hours, lost potential, lost relationships, and lost dreams for millions of women and girls around the world. As a society we can and should be doing better.

I appreciate that everyone’s stories are different and that my case is at the more extreme end of the spectrum. I also feel that things are moving in the right direction in terms of endometriosis awareness, treatment, and funding, and there is much cause for hope.

For many of us though this progress is too little too late, and we have to find ways of rebuilding our own lives the best that we can. This takes time and is not easy but is certainly possible. I like to think I am a living example of that. But I am not the same person as the result of my difficult diagnostic journey, and I feel it is important to tell this part of my story to highlight exactly why diagnostic delay in endometriosis is a cause for concern and it addressing this really matters.

I’m interested to know how long it took you to be diagnosed with endometriosis, and how your diagnosis came about? What impact has the delay had on your life and wellbeing?

Take care,
Claire
xxx

32 thoughts on “Endometriosis and the impact of delayed diagnosis.

  1. This resonates deeply with me. I can only hope we are coming to a point of turnaround for the next generation. I now have access to endo websites and blogs like yours and Bloomin Uterus- but it comes at a point where it is mostly after the fact.

    I am a GenXer, and was only *just* diagnosed. I lost the baby-making apparatus due to extensive issues including endo. I lost my appendix. The endo was found during surgery, but the known problems that led to the hysterectomy were found during my testing for the gallbladder(!) I now have a giant keloid scar running the length of my torso. But the thing is, I am just relieved it is over and grateful for the Doctors who finally listened.

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  2. Thank you for sharing your story. My initial diagnosis was via laparoscopy back in 1997. It took another 20 years of suffering and agony before I finally found a doctor who knew that 1 diagnostic laparoscopy and birth control was not a cure for endometriosis.
    A little over 2 months post-op from removal of my tubes, another cyst, and several lesions I am finally starting to feel normal again.

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  3. I complained about period pain to every doctor I had starting at age 14. They always just brushed it off. After trying to get pregnant for six years seeing both my OB and a fertility specialist, we finally found a doctor that listened. I was diagnosed with stage four endometriosis at age 36. 36!!!! It makes me so angry when I think about it.

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  4. I suffered pain, fatigue & other symptoms since aged 14. I would have lost count of the number of Doctors I had seen about it. Aged 35 I did some research on the internet to find a Centre of Excellence & visited WA Gynaescope. I had a laproscopy which extended into immediate surgery. The extent of the endo was widespread & required hours of surgery.

    I woke up from the surgery & the Specialist delivered my diagnosis, details of the extent of the spread of the endo & exclaimed that he did not know how I had been still functioning in day to day life with the extent of the spread.

    At that point everything that came before the surgery sped past my eyes – falling asleep at my desk while trying to write my doctoral thesis, (I had been berating myself as I thought I was procrastinating), struggling to walk while exploring Venice, heat packs in meetings to get me through the day…the list of “surviving” goes on.

    But since recovering from the surgery (it took a while) I have been “thriving” – I believe it is largely attributed to feeling so fatigued & sore for so many years before surgery that now I am feeling better I really appreciate & acknowledge how good I feel.

    I won’t deny I was disappointed at how long it took to get a diagnosis & treatment. I wont deny that I have reflected on all the things that have been affected by my endo.

    But I choose to look forward, not back & I allow myself to feel good & make the most of my life – to live in the now. I acknowledge I can’t change what happened but I can be part of influencing change into the future, to influence change to our health systems to respond to the needs of people. Not just people with endo, but so every disease state & condition is diagnosed as early as possible to allow for early intervention.

    Yes, I did grieve for the missed opportunities & unneccessary pain & suffering, but I also reflect with pride at the creative adaptations I developed which were necessary to enable me to live the best life I could with the symptoms.

    I lived with wearing the “weighted boots” which was endo for 19 years – I now move with a lightness in my life & for that I am grateful.

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  5. Thank you so much for sharing your story! I found your blog on 27 December, 2017 and I have been on it every day!
    Luckily for me I was pretty proactive with how I was towards my doctors, I still to this day keep pushing for more answers.
    I was 16 when my first Cyst burst but I had pain for years. my doctor would say its normal until the cyst burst. I was put on the pill and it wasn’t until I was 18 was really causing me issues. At 19 I seen a Gynaecologist who said I had insulin resistance and with losing weight I was able to manage the pain again.
    At 20 I was sitting in my Gynaecologists room and I was rocking back and forth and that’s when he scheduled me for a Lap (2 days before my 21st birthday).
    I had a second surgery a month after to remove it.
    I had a Mirena IUD inserted and while that was good for about 2.5 years I am now suffering again.
    only because I have seen my neurologist again has he picked up that my insulin levels have risen and I and pre-diabetic. so back to the drawing board of what to do next. (apart from lose weight which all doctors keep insisting I do).
    so essentially with all the pain from 9 years old of me getting my period it was 12 years.
    Thank you so much again for your blog! I wish I could be so active in the endo community like you are!
    All the best and hope you are having a good (as good as an endo patient can be) day. xxx

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  6. Thank you for sharing your story. Sorry it took so long to be diagnosed. It really is unacceptable how this disease has been ignored. My daughter has it and was very fortunate to be diagnosed within three years of the onset of her first period. Dealing with the diagnosis as a teenager, is hard for her though. Everyone needs to be brace and keep sharing their stories so awareness will be greater.

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  7. To answer your questions, I started to see my GP telling him my periods were excruciating when I was 15. He shrugged his shoulders and offered me birth control. I was super virginal and didn’t really understand why he was offering me BCP’s and since I was 15 I wasn’t sure how that would help my pain. This was 1997.

    In 2013, my pain had increased and I was having ovarian cysts. I went back to my same GP and explained again that I was in horrible pain and asked to be referred to a gynaecologist. He denied my request. I had to write a scathing email demanding the referral before I got it. I, fortunately, very quickly was able to see the Gynae. And, after explaining my pain and problems he offered a laproscopic surgery to explore. My pain was finally acknowledged and I was diagnosed. But, it still wasn’t fully explained to me. I knew my Endo was “burned off”. I thought I would now be fine.

    Cue, 2016, I was having so many ovarian cysts that I could easily distinguish between cyst pain and regular Endo pain. I would go to the ER to get an image and pain relief. I was always right when I sought an image. But, I was also yelled at by an ER doctor when I only wanted an ultrasound and instead I was accused of wanting pills. I stood firm and demanded an ultrasound, noting I never asked for pills. When I got my ultrasound, there was evidence of multiple small cysts that had recently ruptured on one ovary, and multiple cysts on the other ovary awaiting rupture. The Yelling Doctor whipped out his prescription pad and gave me pain relief but never apologized for the yelling.

    In 2016, I also had an ectopic pregnancy, the pain started before the Beta HCG levels could even register. I was crying getting ready to go to work, and my husband was trying to convince me to take a sick day as obviously I was in too much pain to work. I insisted I could power through. When I went out to my vehicle my windshield was completely cracked from driver’s side to passenger. I called my manager and explained the crack and that I had called a company for windshield repair, and we went to the hospital. It took three months of pain and two methotrexate shots before the ectopic was gone. And, when I should have felt better, I felt no better, flummoxed I reached out to the Gynae I was seeing. I felt no better as I had developed a 7cm cyst on my right ovary. They needed to do a laproscopy to take care of it as they were afraid it would torque they also ablated more Endo. I was off work 4 months in total.

    Cue, 2017, in March I started having horrible pain, finally in April I could no longer continue. I started seeing my Gynae again, nothing was working, birth control, even tried Lupron, no pain relief, but fortunately not many awful side effects either. After the Lupron course, back on birth control pretty much just for cyst suppression and to avoid dysmenorrhea. But, I am in constant pain. I went through a battery of tests to rule out other causes of the pain, but everything came back negative and points back to Endo as the main culprit. I have referrals into Doctors who are excision specialists. Endo has cost me everything I hold dear.

    The worst part, is obviously the pain and the waiting. But, the next worst thing is you sitting back watching your life pass you by, when you used to be this incredibly active and goal focussed individual. Moreover, because of societies ableism and shaming. The thoughts creep into your head, and you constantly work through a checklist to confirm in your own mind you aren’t just “lazy”. It goes, “I went to school on a full scholarship, I am a career woman, my husband and I used to run a theatre company together, I want to finish the home improvement projects I started before I became too ill to complete them”. But, that’s it, you are just “too ill”. Thst’s why you are benched. Don’t let ableist thoughts creep in and drag you down more than you already are. But, that is also what delay in diagnosis does. Because, all the time your diagnosis was delayed you were told “it’s you”, not that you have a disease that is doing this to you. No, you aren’t strong enough, it’s just period pain. No! I have a horrific life robbing disease, and had you listened to me, and all the other 1 in 10, the other 176 million, maybe excision would be necessary for all OB/GYN’s to learn and not “further studies”. And perhaps, OB/GYN’s would acknowledge they are ill equipped to treat Endo and ablations are improper treatment. Or, simply, “it’s not me, Doctor, it’s you”.

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  8. I understand how you feel. It took 12yrs for me to be diagnosed. During those 12yrs, I was called a hypochondriac, attention seeking, and mentally ill. If my doctor would have listened when I was a teenager, I would not have spent my thirties in and out of the ER. Needing to move back in with my parents and go on disability. I wouldn’t have had nine surgeries, dozens of failed medication, and ended up with a hysterectomy, and neuropathic pain. I would have been able to continue working and building my life, I would have a successful relationship, and I would be a mother. It took everything.

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  9. I’ve had endometriosis & a cyst for 3yrs now after having a routine gull bladder op & 5 large stonrs removed. Had 2 surgeries, got refered 2 different hospital 4 last laposcopy they lost notes for 3mths but after having op done still in alot of pain all day every day. I work, I have a partner & between us we have 9 children oldest 21 youngest 6. Every day is a struggle & I’m always In pain & tired. Been put on zolaex for 3mths then they gonna do either hysterectomy or remove ovaries. I’m so fed up with it all pretending I’m feeling normal & putting a brave face on.

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  10. I have been diagnosed with endometriosis but wasnt long to discover as i was having problems intimately so was refered to gynocolegy but as a result my marriage broke down as i wasnt at my best & found it so hard to be intimate i have had surgery they have removed it but may come back or have spread around my body also was a lot of pain & felt fatigue all the time

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  11. It took 10 years of being ill with Endometriosis before being diagnosed. I went from one professional to the next in multiple cities over that 10 year period. When I was finally diagnosed with laporoscopy the surgeon did not have any experience with excision surgery. The Endometriosis and some major infection in one of my fallopian tubes was said to be removed with ablation. Ablation removal did not remove it. Less than a year after that surgery I am in worse pain that comes with nausea, chronic fatigue, and the cycle of extreme it feels like I am dying pain followed by depression. I am currently waiting to get in for a complete excision surgery in another city since the city I live in does not have any such surgeons. I only gained knowledge of this gold standard treatment and the surgeon in another city through my own research. I only gained a referral for this next surgery by my own request for complete excision surgery by the surgeon I researched. There would be no hope for me without my own research and self advocacy.

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  12. Hello Claire,
    Thanks for sharing your story. I am a 40 year old woman who was also misdiagnosed for many years. If someone had of informed me that my pain was abnormal I often think the 2 major surgeries I had last year could have been avoided. Along with the scar tissue, internal damage, and residual chronic pain. I work in healthcare and I thought I was a good advocate for my own health. I was wrong. I can’t help but feel anger toward all the doctors who didn’t listen. I truly hope for the next generation better awareness can prevent the delayed diagnosis so many of us experienced. I find some solice knowing I am not alone. I thought for months after the surgeries I would feel “normal” again. However, I now realize I won’t ever have that “normal”. It’s better but different. The chronic pain will be a part of my life now and I have resolved to simply adapt as best as I can. Taking it one day at a time:)

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  13. I only found I had endo cause my husband and I was trying to get pregnant. We tried for 3 yrs. When we married I was 31 so I was 34 or so when we decided to try IVF. It was then when I found out I had endo. The IVF didn’t work. My doctor at the time did not know the problem. It was only when I went back to my Ivf Doctor to get a cyst removed that I found out. I had to have a tubalingation as a result of the endo. I was physically and mentally sick. I chose not to go through with the IVF a 2nd time. I just couldn’t handle the stress. I always have had painful periods, but growing up as a young woman I was taught that was the normal. God has blessed me with a daughter; My husband’s from his first marriage. He has always had custody she was 1 1/2 when we first started dating. She is now 11 going on 21 lol. I think everything happens for a reason. I was meant to be her mother, and with the stress of this disease I know now why God planned this journey for me. I hope and I pray to help some young lady. Some one trying to get pregnant or not. I hope i can help someone before it is to late. My time has come and gone but I hope i can help someone see this alien of a disease as I call it before it is to late.

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  14. To this day I still have not been diagnosed. I have been experiencing this excruciating and extremely uncomfortable pain for the last 5 or 6 years and it has only gotten worse. Every doctor I see wants to run the same test. Blood tests and an ultrasound, all to tell me that I’m ‘normal’ and there is nothing wrong with me. I’ve been to the hospital countless times crying in pain only for the doctor to tell me that they see nothing and that it’s time to ‘stop coming to the hospital and follow up with my GP’. At the end of the day I’m drained, tired and extremely frustrated with my situation and the lack of the listening the doctors do for me. I also suffer from chronic migraines, so when it’s not my stomach, it tends to be a migraine that lasts several weeks at most. I’m only 22 years old and the amount of pain I endure is so overwhelming. Being in pain like this has put a serious strain on my career and has put what feels like a hault on moving up in the world. I met with my gynaecologist to have some more extensive testing done, and he told me he found nothing and that I’m an ‘interesting case’ and a ‘puzzle’. I am now being referred to a pain management program where my next step is quite possibly surgery. The last thing I want is surgery.. I’ve heard that having a laparoscopy can end your chances of ever becoming pregnant, and I feel I’m too young to make that decision at this time. I’m stumped on what to do with myself as of now, and feel that I’ll never be diagnosed or figured out. But here’s to hoping something gives, and someone is able to diagnose me and help me through this.

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    • Hi Michelle! I’m sorry to hear you’re struggling with this at the moment. While I’m not a doctor, and there is always risks associated with any surgery – I’ve always heard that laparoscopic proceedures are really pregnancy-friendly in the long term (unless there are complications for other reasons). In fact, lots of women fall pregnant straight after surgery for endo.
      I’ve had two surgeries and I’m just about to have another, and they aren’t half as scary as they sound. I promise. 🙂 They greatly decrease my pain related afterwards and I am still good to fall pregnant – although if I don’t, it will probably be less to do with the laparoscopy and more to do with the inflammatory disease process of endo itself. 😦
      Good luck lovely. x

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  15. My diagnosis took at least 7 years and in that time I had some awful battles just to be heard. When I finally did get my laparoscopy I was told I had very severe Grade 4 endo throughout pelvis, bowels and in my diaphragm. Then came all the treatments. I sadly was not able to realise my dream of getting pregnant and having a child and in the end made the decision to have a hysterectomy and pursue adoption. I sympathise and can relate to other sufferers who’ve been traumatised by this horrendous disease. I know it’s cost me so much and I feel I am fighting to regain my confidence. This article makes a very important point. It is truly unacceptable for people to be waiting this long for diagnosis and we also need better treatments and a cure.

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  16. Thank you for sending the world such meaningful words of wisdom! I was just now diagnosed with endo after I took matters into my own hands. (34) So my delay in diagnoses was 23 years. Hours and hours adding up to days and months of much research along with the guidance of a friend who recently went through excision herself and recommended her Dr as well as a group that had a ton of info on it.
    My pain began shortly after starting my first period at age 11. Always had very heavy and painful periods. My mom said she was the same. I mentioned it to Dr’s every time I would have my annual exams. But it was mostly shrugged off. Tried a few different birth controls. Nothing really seemed to help. Than pains became stronger when I was 13. Had an Ultrasound and had a gallstone. Great! Very rare for someone this age to have but I figured, Whatever let’s get rid of it it hurts like hell! So now going into surgery on my 14th birthday to have my gallbladder removed. I then started having many issues with urinary tract infections as well as being “diagnosed with Ibs” because of a clear colonoscopy and no real reason as to why I was having diarrhea just about everyday. (Now 15)
    Then I started having low back pain why!!!! I’m young I’m active what the hell! Took years to finally have an mri done to say I have spinal stenosis as well as herniated discs. Great! I’ll just be in pain with diarrhea for the rest of my life! I’ve dealt with it for this long already might as well just deal with it! Soni self managed because I Tired of going to dr.s wasting my time as well as being prescribed pain pills again and again. If I didn’t hate taking pills I would probably be an addict by now. For me they never really helped anyway so why bother taking them.
    I’ve also had ovarian cysts come up from time to time and kept being told it’s normal it happened all the time every month with your cycle. Until the beginning of 2017 when I had one they called complex or possible endometroma. So it was monitored for a few months seemed to shrink so they again said nothing to worry about.
    It was only then till I spoke with my friend about her journey with endo and having excision help her out tremendously that I read and read for hours to find out that all these things that I’ve dealt with my whole life could be related to this one thing endometriosis and no one has ever mentioned it to me before. So at a follow up with my gyn about the “complex cyst” I asked and was told I don’t think that’s your problem and if it was you can have a hysterectomy to get rid of it. And I knew from my research that this was NOT TRUE! So I left and never returned. Started collecting all my records to see about seeking excision surgery with a qualified dr who could deal with all of this! I’m now 4 weeks post op and can say that I have no more Endo pain that I’ve had for 23 years! Sorry this was so long! But I hope it helps others to take matters into their own hands because you are your best advocate!

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  17. Couldn’t have been said any better. Thank you. It took 10 years for a professional to know what was wrong with me and was onIy diagnosed in 2014. I am 37 and have no success in having children. I have had two surgeries in the past 3 years where my fallopian tubes were removed and also 2 cysts. I was then told that i have level 4 endo and that the scaring tissue was to extensive. I was put on the mirena and that didn’t work…so that got taken out after 7 months. I have lost jobs, lost friends, lost my social life and family occasions and times i feel i might lose my husband too. I don’t feel comfortable enough to leave the house of fear of being in pain so i find comfort in staying home, trying to hide a bloated belly… i am a walking chemist. I cannot count the amount of times i was told by a doctor that the pain i was having was IBS or “you’re just imagining it” or “everyone gets that, it’s normal”. This is my life. I really do hope that with all the technology and research, there’s a solution in the near future to proper diagnose this debilitating disease for our sisters, daughters and mothers.

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  18. Although it only took me about 9 months from my first onset of symptoms to be diagnosed, I can relate 100% to everything you wrote about here, just from the perspective of a 16 year old. I was diagnosed through my second laparoscopy–the first was not done by a doctor trained to see Endo in a pediatric patient so it was negative. I am thankful that I was diagnosed so quickly, although Endo has impacted every aspect of my life. I went from a happy, healthy, overachieving, normal teenager at 14 to someone who struggles everyday with pain, fatigue, nausea, and so many other Endo symptoms. My life has been so impacted, in fact, that I now blog about living with Endo to help girls and women to cope with it.

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  19. My diagnosis was an oddly short one.

    Friday: I was in pain when I walked. Every step made by my right leg sent shooting pain through my hip, guts and up my back.
    Monday: Couldn’t take the pain anymore and went to emergency. They assumed two things – a) that I was pregnant (ha!) and b) that it was just my appendix. They found a cyst on my right ovary and referred me to gynaecologist.
    Tuesday: Gynaecologist appointment – she prescribed the pill and told me to come back in 3 months and that it would shrink. I said I was unable to take the pill, fought with her about it, she prescribed it anyway. I then sought a second opinion.
    Friday: Saw second gynaecologist (lucky he could fit me in), he sent me for a second ultrasound right there and then in his offices. Results show that cyst has grown in the 4 days since first ultrasound and he scheduled me for surgery the following Monday.

    Monday: Day of my first ever surgery at the age of 21. Nervous as hell. BP through the roof.
    Monday evening: Woke from surgery, groggy and feeling like I’d be slashed with a sword. Afraid to stand up in case my guts fell out. Was told that surgery went for several hours longer than it should have but no real explanation as to why.

    A week later: Post-op meeting and I was told that he had removed the cyst and that luckily there was minimal damage to the ovary so I got to keep it. However, my system had been riddled with endometriosis. I had no idea what it was and what that meant. He advised that if I wanted children I may find it difficult.

    At that point I had no idea if I wanted kids or not. I experienced the most horrific dreams of screaming babies and doubting myself, my relationship, my body and its attractiveness and feeling like this was not a decision I should be making. I didn’t feel like an adult and this was most definitely an adult decision.

    Months later I came to the conclusion that children were not for me and I let go of all the feelings that were tied up with my surgery and diagnosis. I count myself lucky in that regard, that my decision could very well be in line with the fact that my body wouldn’t be able to have kids.

    I am now 12 years on from diagnosis. I have lived relatively pain free until the last 18 months or so. However short my diagnosis was from first pain, I am now finding I am struggling to deal with the medical profession on the other side of things. New pain, disbelief at my diagnosis, minimising of pain levels/description of pain and resistance to refer me to have tests done and see specialists. I feel like my story is the reverse of many of the women I have been speaking to. I was lucky they just happened to find it at the time, but now…now I wait until April for an appointment. Now I sit here frustrated that once again I have to deal with a body doing foreign things that make no sense. Now I must walk through my life with fragility again when mentally I feel fine and robust.

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  20. I waited over 20 years for a diagnosis. I had been dismissed so often I was seriously worried it was all in my head. It was a relief to be diagnosed with severe endo. A RELIEF!! So much unnecessary and avoidable pain…

    It was only after 3 years of failing to conceive, after 6 failed IUIs, 4 failed IVFs and 1 failed FET, that I finally was referred to a doctor who took me seriously and diagnosed my endo. He also gave us a child (via IVF). One miracle child. We had wanted more, maybe 3 or 4, but my ovaries were so badly damaged by the endo which had encased them for so many years that I started perimenopause at 38yo, when our daughter was a mere 3yo, and haven’t ovulated since. No family history of early menopause and here I am at 41 wondering each period if it will be my last… Wishing for it even, since the pain serves no purpose if I have no eggs left…

    I have to live with these consequences for the rest of my life…

    I am bitter. I am angry. I am hurting. I am grieving the family I could not have.

    And I am determined that my daughter’s generation, and those which follow, will not suffer needlessly as we have.

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  21. Took 25 years for a diagnosis for me. It’s “just” period pain. Now 51, could never have children, had many surgeries and just had a hysterectomy.
    Debilitating.

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  22. Thank you for writing this Clare. Your story is almost a replica of my own. I started symptoms when I was 12 and was finally diagnosed when I was 27 after years of misdiagnosis and suffering. Doctor after doctor dismissed my pain and symptoms. I had an appendectomy, was diagnosed with IBS was told I must have kidney or gall stones… Ended up in emergency countless times and was always dismissed with no help or support (other then pain killers). My lap was almost two years ago and people don’t understand, they think I should be cured. It’s frustrating how little is known of this disease.

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  23. My OBGYN thought I just had large cysts on my ovaries. When she went in laproscopically to do a simple cystectomy, she found stage IV endo pretty much everywhere. I never had the heavy periods but I had horrible hip / pelvic pain. I repeatedly saw an orthopedist, chiropractor, and did physical therapy multiple times a week with no alleviation of the pain. Also… anyone else have pain with intercourse? This was a huge red flag for me. I felt / sometimes still feel like I’m not a woman.

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  24. Hi Claire.
    I read your story with tears in my eyes as I know exactly what you been going thru. I have had this pain for about 3 years and it’s gone from bad to unbearable, my pain is constant 24 hours a day every single day! I can barely get out of bed and go to work, I have no social life as in so much pain. My surgery was scheduled finally for June 2018, 9 months since I have seen the specialist, now they canceled my surgery completely as crisis on nhs and didn’t give my an alternative, that just left me with this monster pain! I have been taking tramadol for 4 months now just so I can live somehow but it’s not really working anymore and I am just exhausted and tired all the time. I do not know what I can do anymore. Can’t afford private. Just feel let down and alone with this pain 😦 It is an invisible disease and can’t believe just how many women are affected and left suffering. My only hope is that I will manage to save the money for a private treatment, this needs to stop tho and women taken seriously and seen as soon as possible as the pain can be very severe and no one really understand unless you experience it yourself. Keep on fighting for better treatment and early diagnosis so we can get our lives back as right now I feel my life has been taken away from me by this disease.

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  25. Hi Claire,
    Thank you for sharing your experience.
    I went undiagnosed for 20 years and spent probably half that time trying to tell drs and family that this wasn’t normal. I had terrible mood swings partly due to the pain and constant aches; fatigue; the need to go to the toilet about 5 times a day in the first 2 days of bleeding (which decreased & alost ceased once removed & recovered); and, general feeling of dread once I started bleeding each month. Being a physical performer, this made doing my job very difficult as it made it hard to consistently work to my greatest potential which i felt guilty about sometimes. I just had to push through it as i was told it was normal and I just had to deal with it.
    I think the most emotionally painful part about the length of time that passed before diagnosis, was that my family didn’t believe me that I knew something wasn’t right and i needed it to be investigated. I had more than one of them suggesting that I might be bipolar because of the mood swings and tiredness, the ups and downs. It hurt a lot to hear them say it when I knew it wasn’t correct.

    Once diagnosed, the Endo was removed and I’ve had about a 3 year ‘break’ from the symptoms but unfortunately those 3 years were very stressful and I feel those unforgettable symptoms returning bit by bit with a little more punch every 2 or 3 months. I was told it would return but was hoping I would get a longer reprieve before it did.
    I must say though, that I am very happy to hear that the awareness & acceptance of Endo being a legitimate issue for so many women is increasing. If the diagnoses can happen sooner rather than later, then, I feel, there will more girls/young women fulfilling their potential free of pain and guilt for missing hours of work.

    Thank you again for sharing.

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  26. 21 years. When I first began menstruating I mentioned to my mother and family doctor that my periods were long and extremely painful. I was told that I was exaggerating and that the first year of periods is rough for anyone.

    My periods have only gotten worse (7-10 days, severe migraines, blood clots, anemia, and pelvic pain severe enough to interfere with daily activities). I would mention this at every Pap smear and the doctor would only change up my birth control method. They would never follow-up to see if the new BC helped. The most that a doctor said was that I might have trouble conceiving because of my thyroid (hypothyroid).

    I had a surprise pregnancy. That was four years ago. Doctors often say that periods change after pregnancy, and mine certainly did, but for the worst. No matter what BC method I used my cycles were not regular: they might be 8 months apart or 2 weeks. The pain became more and more debilitating.

    I’m having a hysterectomy soon – next week in fact. But still, two decades of pain and of missing out on life all because doctors didn’t want to take the time to investigate my silent illness

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  27. Shocked and sad that this is still going on undetected for so long. I had first. period at 13 and remember the pain. This was in 1960.!! Numerous trips to doctors and even as an unattached teenager the doctors comment was it will get better after you have a family. After I was married I had numerous fertility tests, treatments etc. It was in my medical records I had endometriosis, but no one bothered to tell me. Not even the hospital consultants. And no one said it would cause a problem conceiving. Eventually a GP told me I had endometriosis. I then read in newspaper about an expert in fertility treatment and asked my GP to refer me to him. At this time the pain was seven days a week. And I thought I was imagining the pain as no one in the medical profession believed me. All I got was extra strong painkillers, which did not help the pain, only made me feel ill. When I was admitted to hospital for fertility examination I signed a form to allow whatever treatment was necessary . I cant remember the wording. When I was semi awake after operation a nurse told me I had a hysterectomy. When anaesthetic wore off and I was able to understand what I was being told. I had had a hysterectomy, ovaries were removed. My bowels had to be scraped as this was also effected. But the plus side was for the first time in over twenty years I was pain free. This was an amazing feeling. On follow up visit to GP I said it was lucky I asked to be referred as endometriosis had spread so much. Her comment “we would have found out eventually” As I said I feel so sad that so many young women are still suffering and this condition is still going undetected for so long.

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  28. Thank you for sharing your story! Delayed diagnosis is all to common. I didn’t get a diagnosis until last June. I was 33 at the time and was having surgery to remove a very painful cyst on my ovary. I ended up with removal of an ovary and tube that were completely eaten by a massive endometrioma. I had so much scar tissue the surgeon couldn’t even get in laparoscopically. They ended up having to do a horizontal incision. They cleaned me out, and have attempted over the last 7 months to keep things under control. It’s not working and now I’ll be having a total hysterectomy and removal of my remaining ovary in March. I’m not looking forward to menopause at the age of 34, but I think it’s the best chance of less pain and hopefully feeling more like me again. I will say that my delayed diagnosis is my own fault. I wrongfully have assumed my whole post-puberty life that extremely painful/heavy periods were just normal for some women. I had textbook symptoms and I never shared them with my doctor, because I didn’t want to seem like a “whiney” woman. I just toughed it out and dealt with it. It took sharp stabbing pains, that made me feel like passing out, to finally seek treatment. The taboo of talking about our cycles and the lack of common knowledge, that no it’s not normal to have debilitating periods is cause for lots of women silently suffering. I’ve become very vocal about it now. Sharing our stories is spreading awareness that is so needed.

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  29. I love how relatable this post is! While I did not have to wait that long for a diagnosis, it was agony not knowing what was wrong with my body. I love your blog and how real it is about living with endo. Therefore, I have nominated you for the Versatile Blogger Award! You can read more about it in my latest post at http://endogirlblogs.wordpress.com

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  30. Thanks for sharing your story. I am 53 and 5 weeks post total hysterectomy. I feel like I have my life back. After 25 years of incredibly heavy and painful periods, being in pain 3weeks out of 4 a female gynaecologist registrar diagnosed what she thought looked suspiciously like Endo. I’d had countless scans and she was just checking to see whether the Mirena coil I’d had put in the year before to treat Adenomyosis had moved as my periods were becoming so heavy I couldn’t leave the house for two days each cycle. The pain also seemed to be spreading around my body which made me suspect that it couldn’t just be Adenomyosis . When I showed the scan results to the consultant he was dismissive and tried to get me to have yet another mirena or an ablation. Saying I’d soon be menopausal and wouldn’t need any Surgery I reminded him that African and Carribean can go into menopause up to five years later than their white and Asian counterparts and I didn’t want to put up with the distressing symptoms for five more minutes let alone five years. Anyway he agreed to do the surgery and guess what ? I was riddled with Endometriosis. On my uterus, ovaries tubes intestines pelvic perineum. My uterus was stuck to my bowel and most likely what was causing the acute pain. I am angry that they didn’t even consider Endo and if I hadn’t insisted on a Hysterectomy would have fobbed me off yet again. Leaving me to suffer months or years of agony and a deteriorating quality of life. I have a follow up appointment in four months and I will of some constructive feed back about what it’s like not to have one’s experience taken seriously.

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  31. It took about 5-6 years before I got my diagnosis. Which is “fast” as the average diagnosis takes around 7-8 years in Denmark too (where I’m from). I went to see no less than six different doctors before someone finally did something besides prescribing me (more) strong painkillers and saying that I should just take it easy….

    I have stage III endometriosis in my bowel (rectum) and backside of the uterus and ligaments, on my bladder, on my ureter which ended up damaging my kidney as the flow from the kidney to the bladder had been shut off for a long (!) period of time and on my oviduct. I’ve recently had surgery for the endometriosis but not all of it could be removed safely at this point as it had invaded my other organs in such a degree that it is now difficult to remove it without the possibility of “making things worse”…

    I’m mostly baffled by the lack of faith in and understanding for the patients and the symptoms they have. All too often I have left a doctors office with the feeling of being a “burden” with no grounds for complaining. I even when to a gynecologist who told me directly “you do not have endometriosis”….

    At the end I was starting to wonder if I was just more sensitive about cramps etc. than other people – practically losing touch with my self. I wouldn’t get any sleep because of the agonizing pain for several days and something HAD to be done, so eventually I insisted to get a new doctors opinion. Luckily this doctor listened to me and things got fixed (as well as they can by now) but… the process should not be this way and should definitely not be this long.

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