My Endometriosis Hell – Dawn’s Hysterectomy Story

Hi. I am 45 years old, suffered dreadful periods since I was a teenager, heavy bleeding migraines, severe pain. Kept going backwards and forwards to my GP, no avail….. I fell pregnant at 22, had an OK pregnancy, not long after giving birth the symptoms all came back.

Within 2 years I was trying for a 2nd child but nothing happened. I was living in agony with back, lower abdomen, stomach pains all the time, my stomach would blow up so big I had to live in jogging bottoms, it hurt to sit walk or do anything . I was so tired depressed, never slept at night as it was so bad, I would sit up every night crying in pain. I went to through all the doctors in the surgery, had all sorts of things said like you are over weight go on a diet, its IBS.

After 2 yrs. I took my husband with me to the docs, demanded a referral to hospital to gynae. She was very reluctant but did give me a sealed letter to take down to hospital. I got my appointment quickly, I opened the letter before I went, I was furious what she had written, a few words I was a time waster and had got IBS………

On the appointment I gave him the letter, his face was a picture, after examination he said you have severe endometriosis. I hadn’t got a clue what that was. After a scan etc. it revealed a very large, chocolate cyst sized like a large grapefruit. I had the surgery to remove it but had to lose 1 ovary too. They said it was bad and they lazered a lot of it away but it may return.

I was so mad that it hadn’t been picked up sooner. I underwent Danazol injections for months in the groin and also other hormone tablets. They said I may not get pregnant again but I did soon after the injections.

I had an OK pregnancy but soon after it came back. I was backwards and forwards at docs and hospital. I had a hysterectomy but was advised to leave my only ovary in, so did. They said the endometriosis was quite bad and had a lot of scarring. My ovary was in quite good condition. I seemed to be better for about another 2yrs. then hey presto it came back, during that time I had developed stress incontinence, my doc said that it was common after a hysterectomy. I had been to get treatment for it exercises etc. nothing worked.

That takes me up to Feb this year the pain was bad so I decided to go and get my ovary removed, I mentioned my incontinence, he said we can help with that to and do it at the same time in 1 op. He referred me to a specialist in the same hospital, went through all the tests and yes I needed help, he said a TVT tape is good, just said its a tape supporting he bladder. I said have you got any leaflets I want to know more, they didn’t have any left I was told, so I went ahead and had it all done in June this year.

All went quite well, pains as normal as I thought, after 2months it wasn’t getting much better, I had pains in my groin, bum, legs and pins and needles all the time in my legs feet, pain walking, it felt like it was pulling either side my groin, pain sitting lying down everything hurt, it also feels like I have been kicked between the legs.

I got a follow up appointment with the hospital, he said give it a bit longer, he had a look and said it was fine, I will see you in a few months and if its no better we will give you steroid injections in that area as it mite be your nerves damaged.

Hey its now Oct 2013 and guess what its still there, going back in November am fed up of pain , doctors don’t want to know, said its arthritis my arse…….

I have looked up on net about the TVT op and I wish I hadn’t had it done, am sick of pain I’ve had it all my life with endometriosis now I’ve got this, I am going through the change to, tried HRT, made me worse in pain so not on anything now only loads of vitamin tablets. I can’t run or do my aerobics any more or even sex, just had it a couple of times since the TVT op. The net is my friend I know more than the docs. They didn’t tell me anything about it because its no good, it’s only been around about 10 yrs. and we are all being tested on. Many women have had the tape taken out, many in chronic pain, many had steroid injections, but they aren’t a cure so what do I do? Also I forgot to mention I have been severely depressed tired run down for about 20 yrs. due to all this, been on antidepressants ever since.

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