Endometriosis UK
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Anger - Let Down by NHS

I am 31 years old. Been back and forth to the doctors and even consultant gynae for many years now. Have always experienced hellish periods and bowel/bladder pain. This was all from my teens. I started trying to conceive 2-3 years ago and was referred to a fertility specialist. We tried Clomid for 6 months with no joy. My consultant suggested as investigative lap. Well what should have been a 30 min procedure turned into hours. They found stage 4 endo coating my insides. By bladder, bowel, uterus, tubes and ovaries were a mess. I lost one tube and ovary and the remaining tube and ovary are very damaged also. I am now in the throws of IVF which so far is not working out. Consultant thinks this is because the remaining ovary is so damaged. I am angry and sick with nerves. I have been robbed of my chance to become a mother, infertile and mutilated on the inside because these incompetent dickheads did not connect the dots. I am even considering legal action as the damage that has been done, I will never recover from. I am distressed. I just can't believe this is happening to me.

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I feel your anger hun. Took 18 years for me to get diagnosed even then I diagnosed myself ( told the docs I had it and demanded a lap) never once was it mentioned to me.

My endo isn't as bad as yours hun but I did have partially blocked tubes which I managed to clear with serrapeptase it eats scar tissue maybe it will help you just a suggestion. Have you tried acupuncture and other natural health remedies they might help I know it seems like what's the point because of what's going on but you always here of miracles happening and even if the natural route helps you produce some decent eggs then you could hopefully peruse ivf. I just think if the man made meds aren't helping surely the natural way will do and since iv gone natural not totally but will be soon hopefully I feel much better and I am conceiving their just not sticking were as before I wasn't concieiving at all. Hope you get some sort of relief from this headache soon keep your mind open and try to be good to yourself hun. Big hugs 🤗💗😘

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Hello,

I'm really sorry this happened to you. Apart from the trying for a baby, this could have been written by me! I'm also 31 and just recovering from what should have been a quick investigative laposcopy. I too went to my gp on and off for years in agony with periods and then in January I started to get the horrendous pain when I wasn't having a period, to the point where it would literally just come on and I was screaming in pain. I kept going back to my gp and they wouldn't refer me, to the point one day I cried and asked them what I had to do to get the referral. By March I had to stop work and couldn't walk properly as was in constant pain. I couldn't go to the gym or yoga or socialise and had days and days where I couldn't leave the house. My bladder started playing up around Jan too, to the point where it felt it was ruining my life. I felt horrendous (still do) as felt like a prisoner in my home, was in pain (to the point where I've vommitted from sheer agony) and was utterly debilated by this. Anyway once I got my referral and saw the gynaecologist (two trips) I had to wait 2 months for lap and cystoscopy for bladder and they still weren't convinced and on the day even the surgeon said lap wouldn't show up and that the bladder was the main issue. Anyway turns out I was developing something called frozen pelvis which sounds horrendous. My ovaries were stuck to my pelvic wall, my bladder was stuck to something else as was my uterus. They removed lots of adhesions, scar tissue and endo. Funnily enough lots also in my pouch of Douglas which I suppose explains the excruciating period pain I had up my bum which my gp though was normal (along with the limp I developed every period). I was also told fertility was now an issue, but unlike you I haven't been trying or had the problems you have. I'm so sorry this happened to you, it's awful and you must feel so angry and hurt. It's disgusting that no one looked into this sooner. Sorry for the long post but I thought I'd share so you knew that this is happening to thousands of women, if not millions over the years and world. Something needs to be done. Doctors need educating and actually need to stop playing god with women's bodies. We know what's normal and what's not. I told my gp numerous times I think I have endo and she was rude and said it wasn't and wouldn't refer me despite been in pain everyday. There are so many women this happens to, I'm sorry you have been one of them and I hope that you are successful in having a baby.

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This is just so spot on.... I've just turned 34 and have had awful periods since I was 12. Everyone told me it was normal. It wasn't until a year ago, when things suddenly got so much worse, exactly like you said. I can't leave the house for days on end, the pain is all through the month, I've went from 100 to 130 pounds because I went from being really active to no gym, hikes, yoga, or hooping. Everything hurts. Walking alone makes the pain in the bottom of my spine shoot up.

A year after finally breaking down and going to the doctor, I'm about to have my first lap sometime in December. Why does it take so long to get this thing sorted out? It's so frustrating. Meanwhile, the lives of countless women are just trainwrecked while the doctors take their sweet, sweet time. 😡

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We are really similar! I'm sure we could each share other equally horrendously painful and frankly bizarre ways we suffered during our periods, all which GP's ( people with medical training!) think are completely normal and fine. It's awful having to wait and be in a kind of agonising limbo and I hope December comes around soon for you. Try ring the patient co-ordinator to speed it up. It didn't work for me but you never know. I hope everything gets sorted soon. Hang on in there! X

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I understand you.

I'm not trying for a baby, but otherwise it's my story. I've also got a cyst on my right ovary through it too and have been going on and off (although never referred to a gyno) about the pain, describing how it was agony and in great details about it, but told it was normal.

I don't have anything else to say as I haven't even had my first proper gyno appointment yet, but I'm there too, you're not alone, and I'm sorry it's happening to so many of us.

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I had cysts on my left ovary too, the one that I've now lost. They MISSED a large endometrial cyst that was larger than my actual uterus, which was perched on top of my uterus squashing everything. The only thing I would say is if things don't feel right, don't make my mistake and always accept what the doctors are telling you. You know your body better than anyone. I wish I knew what to ask for (lap) and furthermore, that I had the guts to push for one.

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