Endometriosis UK
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Endometriosis: About me & Getting diagnosed...PROBLEMS!

Hi

I am new to this forum, so hopefully I am doing it right!

I am looking for personal experiences of others who may have had issues getting diagnosed with endometriosis (I know this is common), but who have eventually got a diagnosis.

I have experienced awful gynecological problems since my periods started, I am 36 now, but it really peaked in my early 20's and has continued down hill since then.

My periods are very, very heavy, and very, very painful. I was put onto the depo injection around 22 to try and control my periods. It did quite well, in terms of reducing the heaviness of my periods, but I still got bad (although no where near as bad as now) pain. I got diagnosed with early cervical cancer in 2009 treated with Cone biopsies, and had horrendous issues post surgery due to excess scarring resulting in further surgery. As a result, I am not able to take the depo injection as it is linked to excessive scar tissue.

Since then my periods and pain continued to be horrendous, focusing around my pelvis and coccyx area, with some bowel symptoms and pain. I was referred to gynae who suspected endometriosis. I was put on Yasmin to tri-cycle, with little effect, but they said it is very hard to see endometriosis, even under laproscopy, so didn't feel it warranted a diagnostic lap at that time. They said I probably had IBS as well. I struggled on, and gave up on getting to the bottom of things. I then started to experience crippling right shoulder pain, and lower right abdominal/ pelvic pain which were at the most intense the week before and during my periods. I told various health professionals this, but they were adamant it was coincidental and a shoulder problem. I started to see a lovely new GP whose wife has endo so he has a special interest in it, and after 4 years of fruitless tests on my shoulder, he felt it may be endometriosis spread to the diaphragm, referring pain to my shoulder. I was referred back to the hospital, to a lovely consultant who was positive from my symptoms I had endometriosis, and said he sees a lot of endo patients who experience shoulder pain. He said, we have wasted enough time, lets get a laproscopy done. I was so relieved. He also talked about putting me into the false menopause for 6 months to give a true diagnosis if endo wasn't obvious. He organized an ultrascan before the surgery, and they could not locate my right ovary, as they couldn't get my bowel out of the way, but didn't seem concerned. I had the laproscopy, and on waking the surgeon came to tell me he couldn't see any signs of endo, but that my bowels and appendix were all stuck together with adhesions and scarring. He said he felt it was a gastro issue, and would refer me to a gastro consultant due to a family history of crohn's disease. After 6 weeks, when no appointment had come, I contacted our GP, could not see my own GP, who said that there was no need to refer on, as I had probably just had appendicitis at some time without realizing it. She made me feel I had wasted everybody's times having the laproscopy as it hadn't shown Endo.

I have gone on another few months and am experiencing all the same symptoms as before, plus very painful bowel movements/ pain in my bottom, IBS symptoms and painful sex, all increased at time of my monthly cycle. My own GP still feels very strongly I have endo, and has referred me back to the gynae. I am awaiting further appointments

Has anyone ever had endo fail to show on the first laproscopy? I honestly cant walk the day before my periods the pain is so bad at times, could the pain be this bad with no visible/ minimal endo?

thanks for reading my post

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