Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Pain 8 weeks after hysterectomy

by Anonymous

On December 20th, 2011 I finally had a surgery to remove my ovaries and uterus because of endometriosis.

After a five year battle and endless pain I felt this was my only salvation. I have my two kids and no longer want any more so I figured no harm, let's do it.

Christmas was really hard, my blood pressure was still so low, I could barely stand. To make matters worst, I turned 30 the 2nd day in January.

Nothing could prepare me for the battle I am fighting. I never imagined I would be sad about loosing my "baby-maker" but I was. Emotionally, I am a mess! It would be worth it if my pain were better, but it is not!

This past week my pain is severe..to the point where it is hard to simply stand at the end of the day. I am so tired of pain and restrictions. I went through every extreme to make sure I wouldn't feel this any more and yet here I stand, or lack there of.

I am truly hoping that in time it will get better but hope is all I have. Please tell me this will subside! They also took my appendix (my request), that was encased in the stage 4 level of endometriosis. I thought that I had thought of everything and never imagined the pain still being here.



Title: Hysterectomy and Endometriosis

I had a complete hysterectomy on September 16, 2009, and I am only 30 years old. They even had to take my appendix out due to the endometriosis being so bad. About 6 weeks after surgery I started having pain again and found out they could not get it all out.

I had been having pain for years before my surgery and they treated it as a kidney infection. I would have never known I had it...if I would have not been rushed to the hospital on July 27, 2009. I was bleeding internally and had lost 4 units of blood, when they did that surgery for a cyst that had ruptured is when they found the endometriosis.

It has been a long battle and almost two years later I still feel bad. I have hot flashes all day and my energy levels went down hill. If I had it to do all over again I don't think I would have had a hysterectomy because I am still having the issues to this day.

Name: Debs

Title: End of the line

I too have been down this long and sorry road for several years. I was diagnosed with endometriosis which I had lasered but still had pain. I was told I could be imagining it, or that it was IBS! Then I thought "sod it" and decided I would have a total hysterectomy as the consultant told me this has work on every woman he has performed the operation on, so I had high hopes.

They found Adenomyosis inside my womb, so I thought that was my problem solved. 4 months after, I was still in pain, made much worse by oestrogen. Just trying to convince him of this was near on impossible. I am staggered that such an experienced consultant seems to know (or admit to knowing) so little about the symptoms.

So, 2 weeks ago, he did another op and found some more endometriosis, my bowel was stuck down and that my hysterectomy wounds hadn't healed properly, so he cauterized that.

3 weeks later, I am still in pain from taking oestrogen, so clearly he hasn't got it all. I think I am just gonna go "cold turkey" and put up with the symptoms of menopause. It's either that or lose my job as there is no way I can work in that amount of pain.

If anyone knows of anything that will help, please drop me a line as I don't know what else to do. Thanks ladies and I really feel for you all who are experiencing the same thing. soldier1051@yahoo.co.uk. xxxxx

Name: Jules

Title: Put Hysterectomy on Hold through Fear of worse adhesions and pain

We can only pray that one day at a minimum our pain physical and emotional will be recognised by the medical profession and the wider public.
I have been so far avoiding a salpingo bilateral oopherectomy through utter fear!

I have had both tubes removed and various ops laparoscopy and hysteroscopy. Ovary was attached to bowel and fallopian tube stump adhered the other side plus endometriosis and adhesions around belly button.

All I can say is I live in constant pain. In menopause now but get horrible pinchy pain in right pelvis worse when sitting, pain makes me feel sick, better when upright or walking and ongoing bowel problems, constipation despite numerous stool softeners and the odd Senna, then occasional bouts of severe diarrhoea where I barely make the loo.

Frequency of urination seem to be urinating every 20 minutes! Pain wakes me at night and every morning relieved a bit by going to the loo! Even eating can irritate it, although also CT scan picked up Diverculitis Disease and Hiatus Hernia.

History of endometriosis and filmy adhesions, tilted uterus and don't know where to turn to next! Afraid Hysterectomy will make adhesions worse and last op was so painful and so sick on morphine I am now terrified of the big H!

Having ultrasound soon to check for cysts etc as being menopausal with my history of endometriosis there is apparently higher risk of Big C. Nightmare journey and equally awful having to deal with a society who doesn't understand or care and thinks sufferers of this condition are drama queens and attention seekers. No, this condition is a life destroyer.

How can you get on with constant chronic pain and no cure!

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