My Endometriosis Experience

Officially I was diagnosed with endometriosis in October 2010 when I was 22. But I began suffering noticeably with all of the symptoms from around 16/17. I had been back and forward to the doctors and the hospital numerous times throughout that period and not once did I have it mentioned that I might be suffering with endometriosis. That word never came up until mid 2010. In the mean time I was diagnosed with all manner of illness, I was told it was IBS, an internal hernia, kidney infection, gall / kidney stones, tested for ectopic pregnancy, irregular period cramps, appendicitis and grumbling appendix.

Back to being around 16/17, it was one day in particular I was out with my Mum and out of nowhere came this crippling pain in my abdominal area, it quite literally had me in a ball on the floor, I’d never until that point experienced pain like it, it was excruciating. It persisted for what felt like a lifetime, in real time, around 2/3 hours. The pain would vary during this time. I went to the doctors the following day and they put it down to IBS. They listened to my symptoms, lay me on a bed and prodded around my abdomen before making their diagnosis, prescribed me pain killers and suggested I up my fibre intake. These pains continued from that point, the pain would vary, it was always and still is particularly worse more over on my right side of my abdomen. I would get no warning of any pain until it hit me like someone driving a sword through my abdomen and proceeding to twist it around. Period pain was the worst and it seemed to continue to get increasingly worse, month after month. I noticed my periods were also a lot heavier than they used to be. This continued to be the case along with the increased pain.

A pattern began to emerge over the coming years until it reached a head in 2010 when I was referred privately. I would suffer regularly with this pain and discomfort, many a night I would find myself at the out of hours centre at my local hospital. They always checked for appendicitis first given the nature of my symptoms but I lacked other key symptoms leading them to rule this out, they did mention frequently it might be grumbling appendix, basically a blockage of my appendix and it would either work itself free, or rupture, not a great thought so of course this made me feel no better for worrying that my appendix might randomly rupture on me bringing with it its own array of problems! Fortunately this was not the case, although a lot of my time being undiagnosed this was routinely thrown up in the air. Internal hernias became a popular choice also, I would often hear that. IBS was another one. Not once in all of my trips to the doctor or the hospital was I ever offered further investigation, scans, etc. The most they did was take bloods from me. Over a period of 5/6 years I find this actually quite disgusting. More so having discovered what I actually have and that left untreated would cause further damage, some of which may be irreversible. Perhaps it was my being young and naive that led me to trust in the medical staff as much as I did, and not to push it further. If it was now I would certainly do more about it than I did at that point. You live, you learn.

Around late August 2010 I asked that my doctor referred me to see a specialist and I had an appointment made with a gynaecologist in September. Things began moving a lot quicker having been referred privately. My appointment was around a fortnight from the referral. I met with the specialist and explained all of my symptoms, he conducted an examination and he suggested one of two things, one being endometriosis, this being the first time I had ever heard of such a condition, and the second that I may have had a second much smaller uterus. He said he would need to carry out a procedure called a laparoscopy (key hole investigative surgery) to enable him to see fully what is going on inside my abdomen. He went into more detail about endometriosis and I had to sign a consent form allowing him to carry out the corrective procedure should he find endometriosis. This would be to burn away tissue in any affected areas. He did mention that if it were too progressed for that to be a success, I may be looking at having a hysterectomy. I would require a second surgery if this was the case. At that point I really don’t know how I felt. I had just been given an awful lot of information to take in, potentially life changing information. I went away and did my own research into what exactly endometriosis is. I had some information from the specialist also. I tried not to think too much into it all until I had found out what I actually had wrong with me. I was hoping it wouldn’t be endometriosis as one point I did become aware of is that it can impact my chances of having a baby. Not something I was considering at that time, but when suddenly faced with the prospect of not being able to have one it was hard to get my head around. It might sound silly to say this, but in light of fact I was facing the possibility of being unable to have my own child, I found myself thinking about a baby more than ever, I would even dream about them. I felt as if I were sad and missing baby I had never had.

A week later I had my pre op assessment. The following week I was back for my operation. Despite being my second op, I felt so nervous and anxious about it. I think a lot of that was because I would find out what was wrong, I had a gut feeling it would be endometriosis as I matched all of the symptoms to a T, but I tried to remain hopeful it would be something simple that could be cured. The nurse took me down to theatre, I lay on a hospital bed and was given a mask to hold over my face which would administer anaesthetic gas, next thing I was aware of was a god awful, excruciating pain in my abdomen, bright lights were all I saw as I began to open my eyes and suddenly I had became convinced of having woke up mid operation, I panicked, I was restless, crying, screaming and out of what seemed like nowhere I had 3 or 4 nurses around me trying to calm me, one was syringing something into my cannula, a strong pain-killer I think, I felt the rush of fluid go up my arm and I could feel the pain muting, it was almost instant. In my groggy post operative state I heard one of the nurses mention that endometriosis had been found and treated while in surgery. It felt like someone had knocked the wind right out of me. I was wheeled out of recovery and back to my room, I had to be kept on a drip for a 24 hour period so was kept in overnight. I was in a lot of discomfort from both the operation itself and from the carbon dioxide which they use to inflate your abdomen to allow for a laparoscopy to be carried out. They take out as much as they can but what was left made it unbearable for me to even lift my head off the pillow. The specialist came around a little later to discuss his finding and how the surgery had gone. He said that as he had expected, he did find endometriosis and carried out endometrial ablation. He said I had a lot of effected areas, he proceeded to tell me he removed tissue from my uterus, ovaries, fallopian tubes, pelvis and bladder. He said it was lucky we found it when we did. I was kept under close observation until I was discharged and given regular pain relief. I was in so much discomfort during my hospital stay that despite being desperate for the toilet I was too sore to move out of bed and lay there all night unable to sleep, too frightened to move for the pain it would cause. When I eventually did get up to go I sat in the bathroom crying, drip bag in one hand, head in the other, I’d never felt so broken.

I went home the following day armed with an array of pain relief which soon become my best friend. I was still struggling with moving due to the carbon dioxide gas, my abdomen felt as thought it was being stabbed from all angles. I would sometimes feel what I can only describe as a hot sensation inside my abdomen, as if someone were dribbling warm water over me. I can only assume this was due to having so much tissue burned away. The recovery process was around 4-6 weeks, at which point I went back to meet my consultant for a post operative consultation and to feedback how I have been since. He showed me images from the op where there was a lot blood pooled up inside me with nowhere to go. I was actually surprised to see as much, but I guess it had a lot of time to accumulate over years while I was routinely misdiagnosed. During my appointment I was instructed to take the contraceptive pill continuously without breaks. If I ever found myself bleeding while on the pill, he advised I take a four-day break and recommence with taking it daily, back to back packets. Continuously running the pill back to back seemed to help a little as no further damage was being done by stopping any bleeds. Despite surgery and taking the pill as suggested I never found myself symptom free as I had hoped. Granted I no longer found myself with the excruciating pain I had in the past, but I still suffered regularly with pains.

Between one and two years later I arranged to go back to see my consultant as I felt my symptoms were worsening at that point. I was then put on injections every three-month which medically induced menopause, completely stopping my reproductive system all together. It brought on the unwelcome hot flashes that go hand in hand with menopause but other than that I remained symptom free while on this medication. The nurse injected into my abdomen area, it nipped a bit at the time, and then for up to a couple of weeks after a lump formed, first a hard pea sized lump at the point of injection, gradually increasing to around 3 times the size, it was quite tender, swollen and bruise. I stayed on the injections for over a year, this is all that is suggested as a side effect of the mediation is reduced bone density. Three months from my final injection I reverted back to taking the pill continuously and to this day I still do. Since the injections and continued taking of the pill my symptoms are barely noticeable. I still get odd niggles but nothing like I used too. One good thing I can definitely take from this is no monthly periods and that cramp that goes with. Every cloud and all.

Having typed this all out and brought the whole experience to the forefront of my mind, it makes me feel quite angry and upset at spending so long undiagnosed with what I consider poor investigation, if you could even call it that. I wish I knew what endometriosis was to have been able to suggest it myself. Unbeknown to myself at the time more and more damage was being done every single month and I am glad I decided to go private when I did else the outcome may have been a lot worse. The symptoms are quite broad and could be many other problems, but if you suffer with any of the symptoms I have I would urge you to suggest that you at least be tested for endometriosis, if for no other reason than to rule it out. I was lucky enough for mine to be caught at a stage it wasn’t so progressed that I had any life altering changes made. I might have difficulties ahead of me when the time is right to start a family, but I won’t know until that time. I remain hopeful I will be able to do so without any problems. Only time will tell, and those bridges will be crossed at that time but I find remaining positive to be the best medicine.

I know this is quite a lengthly and detailed post, and I hope more than anything I can used my experience to help others. I am also more than happy to answer any further questions if there are any areas I have not covered in this post which you might like more information on. I believe in taking a bad situation and turning into a positive one and in sharing my post and my experience hopefully it will help others.

If like me you also suffer with endometriosis I would be interested to find out how you manage your symptoms and how you have dealt with it. Leave me a comment to let me know.

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27 Comments

  1. Wow! You are a very brave woman. Thank you for sharing your story. I hope it educates and enlightens as many as possible.

    Suffice it to say that I’ll be doing my part in spreading the word!

    Thank you!

    1. Thank you for taking the time to read it, I know it’s quite long. I really do hope it helps to raise awareness and make it more well known.

  2. Dear Mel, you have been through so much, and, honestly, your anger is completely justified hon. Since moving the UK, I have noticed first hand how awful the medical care is here. Yes, NHS is free which is amazing and this country prides itself in it. But let’s look at quality. My hubby has been through so much (and myself with him) from being misdiagnosed to being prescribed stuff which made his condition worse. After we have had enough, we went private. Thank goodness for that and proper tests and diagnosis. Everything is perfect and it’s all sorted <3
    I have developed tummy pains which I've never had before. But I am thinking mine has to do with food. I have put of a good amount of weight and I still can't adjust to the local food. Even after 2 years. So weird. I've been told I might have IBS as well. I think they diagnose everyone with it! Though, I don't have the symptoms of it. Which means – I need it properly diagnosed. And I might do it abroad, back in my home country. Anyway… sorry about this rant, lovely.
    The main thing is you're doing better. Sending MASSIVE hugs your way. Thank you so much for writing this in-depth post and sharing your story. I think it can be super helpful to many women.
    xox Nadia
    http://www.mielandmint.com

    1. Thank you for your reply. The NHS is under a lot of pressure and it makes getting a proper diagnosed nearly impossible with some things. Like you said, thankfully all has been sorted before anything too problematic could happen fortunately. I’m sure some people might not be so lucky. Thank you for taking the time to read this also. I really hope that it will help other women, or make the condition more known. XX

  3. Wow – you’ve been through the mill with this! Such a good post to share.
    I too have been getting crippling tummy pains that last about 30 mins and only come on at night – I get them for about a week, 3 or 4 times a year.
    Consultant has suggested a laparoscopy to determine what the pain is but also said if I can power through the episodes then it might not be worth it…this leaves me much confused!!
    Thanks for sharing
    Em x
    http://happywiseowl.com

  4. Wow, how brave of your to share your story. I’ve been tested for all the above you mentioned and still 6 years later, nobody is any the wiser. Hopefully I’ll be diagnosed with something soon (I just want an answer) and they can put me on the right track to manage the pain effectively..

  5. Thank you for such an indepth post. I was just diagnosed last week after over a decade of back & forth hospital trips & them unable to give a diagnosis. I had to be pretty insistent at this last hospital trip & it worked.
    I hadn’t really heard much about the condition, so your post is a help & has solidified my resolve to try holistic options.
    I went vegan in december & it has been really helping to relieve the pain.
    I’ve also read that cutting dairy can help if you arent able to go vegan.
    Hope you feel better

  6. Wow I had tears in my eyes reading this, I know so many women who suffer from Endometriosis and i’ve seen first hand how it can easily ruin lives. I commend you on sharing your story so frank and honestly, I really think this will help a lot of people.

    Wish you all the luck in the world with your health and fingers crossed you’ve been through the worst.

    Laura xo

    1. Thank you so much for your comment, means so much to me. I’ve had such an amazing response to this. I really wasn’t expecting it. I hope that it helps others. I really do. X

  7. I am not really familiar with the matter not suffering from it nor any of my friends but I have read few articles. Thanks for sharing with us. You’re really brave. I hope your post will help other women who suffers from the same conditions. Sending lods of live! xx Corinne

  8. Wow, you are such a strong person Mel. It’s crazy to see how much you’ve been through and it sucks for what happened but you are so strong and I honestly just wish the best for you. This post is so important and everyone should read this because I was honestly touched. I’m sorry for what you’ve had to go through but in my eyes, I’ve just gained so, so much respect for you. You are absolutely beautiful, a wonderful person and you seriously deserve all the love, happiness and success in the world! xx

  9. This is such a good post and so informative! It’s really brave of you to share your story.

    I’ve been suffering with similar symptoms for over 2 years now and I feel like I’m getting nowhere. Endless GP visits and countless trips to A&E before being discharged with “kidney infection” or “grumbling appendix”!!

    I have read so many people’s stories and all of them it seems to be years before diagnosis.

    I’m going to push to get tested for endometriosis, to rule it out if nothing else.

    Thank you for sharing! Xx

  10. This is such a beautiful, open and honest post and you’re very brave to have shared your story with us on such a level.

    I know exactly how you feel, as from the same age as you I experienced the same sort of discomfort, and visited the doctors numerous times before they began taking me seriously, even then, I believe it was through ‘luck’ (if you can call it that) that I mentioned my Mum’s history with endo and so they decided to look into that.

    I think I was eighteen by the time they properly started examining me.

    I’m in a weird boat though, because despite everything pointing towards that as a diagnoses, I’ve abandoned the tests, I turned down the laparoscopy, and didn’t want it to go any further – I know that sounds crazy when you spend so long trying to prove there is something genuinely wrong with you, but I got to the point where I was so terrified of knowing for sure, and not being able to come back from it, that I decided ignorance was bliss.

    One of the biggest things for me was children, I always, always wanted a baby, so to know there was the chance I might not be able to conceive was heartbreaking for me, so with that in mind, part of me decided all the time I go undiagnosed there’s still the chance.

    Perhaps that all sounds insane? Either way, I’m grateful to have read your experience! More people need to talk about it, especially young people. It’s a very traumatising thing to go through, and something not a lot of people have even heard of.

    Well done you and wishing you so much luck in the future. xxx

  11. Hi Melanie,

    I too suffer from Endometriosis and I want to thank you for telling your story. It was quite an emotional read and I probably shouldn’t have read it at work, haha!
    The more people that talk about Endometriosis, the better, and you’re contributing to the awareness.

    I had a laparoscopy in 2014 and my symptoms have started to come back in the last year. For now, they’re manageable, but I must admit that I’m both worried and pleased that I actually now have a cycle for the first time ever.

    I did manage the pain with hot baths, blankets, pain killers and a Yu Yu bottle (for the shape), but I discovered signs of Erythema ab igne starting to show, so I no longer use the hot water bottles. Luckily I have an office job, so I’m seated with a blanket most of the time.

    Love the blog and will be popping in again!
    Carly

  12. What an important post. Well done for speaking out about your experience. So many friends of mine have had similar issues with a lack of diagnosis and/or their symptoms not being treated seriously. The signs of an overworked NHS I suppose. So glad you are feeling better now. This post is important; thankyou for writing it.

  13. I’ve definitely had it since I got my period but I’m 27 now and only last year after a prolonged stay in the emergency department did they finally admit that it was endometriosis. Still a year on, I’m on the waiting list to see a specialist but no appointment in sight. I’ve been on the high dose pill skipping periods for 6 months at a time for as long as I can remember but I don’t know why I was never referred to a specialist when I have the typical symptoms and am on the treatment for it. I’ve got so many other medical problems though so I don’t know that burning the tissue away will be an option for me.

  14. Hi I went through a hysterectomy when nothing else would cure it.
    This subject is not well covered in the medical world so well done for bringing this up. However I have recently read about links with meats and endometriosis as I think mine is starting to come back again. I have now gone meat free and it is proven to reverse effects! Watch “what the health” on Netflix to find out more and then google dioxins xx

  15. I planned on writing about my experience soon when I stumbled upon this! I just had my surgery to remove endo & polyps 2 months ago. It’s been something I was struggling with since 16. My doctor has me on 2 different types of low estrogen birth controls to stop my periods completely for the next couple of years to prevent the growth of my endometrium. Right before surgery, I was hospitalized for a week due to dehydration, low levels of phosphorous and other vitamins. My period did this to me. The day my mom took me to the hospital I was crawling around on the floor throwing up everywhere and literally asking for death. The most horrific experience of my life. Thank you for sharing! Glad to know I’m not alone 🙂
    -Charli Dawns
    http://Www.thebreakofdawns.com

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