Endometriosis UK

Joined today!

Hi all

Just joined up today :) First time on a blogging website too so all new...

Hoping this will help with some questions about my condition that keeps me up at night.

I had a long and messy process of being diagnosed with Endometrioses over the last couple of years after suffering chronic pelvic pain and very low immune system.

Within the last year I’ve had an two operation and one of which has now changed my life but I’m so scared of going through this again and am constantly thinking about it.

Any advise to couple with things day to day...


4 Replies

Wow ditto! Sounds just like me! Took me 17 years to get diagnosed and just had 3 laps since Aug. So much better and able to enjoy life again. Bern on holiday for first time in 2 years. I try not to think about the future, just enjoying the here and now!


wow 17 years... so long!! So glad that you are feeling well though. Where did you go on holiday?

Its been so hard…I knew that something was not right for a good 7 years but never really took note and kinda fobbed it off. My advice now to anyone having any kinda of pain within that area...never put it off its not normal and should be looked at!!

About 2 years ago my nightmare started was so bad with pain on my right side, shooting pains down my leg and up my back. I went for every test you can imagine and trust me some of it was horrid like PID, SID which put strain on my marriage and its seemed like the doctors were just passing me from pillar to post. Only after several internal scans and external scans they decided to do a investigation op and found a total mess inside. The doctors total me when I came round that they were unable to see anything due to the dense and severe addesions. I was then referred to have a CAT scan and then was put on hormone injections for 7 months before waiting another 5 months for an operation. They were worried as there were signs of endometriosis on my lower intestines. I was lucky though as didn’t require a resection in the end just had to have my left tube removed. The found my right side was all twisted and that the addesions had caused my ovary and tube to curled…hence the pain wrapping a massive nodule of endometriosis.


Hi, sorry to hear this, it took me 11 years to get treatment, unfortunately diagnosis comes too late, the cyst on my ovary burst resulting in scar tissue, then build up of the lining of the womb, hysterectomy, and then a cyst on other ovary removed a year later, the GP had told me I didnt need to see a specialist even though I saw them at least once a month with pelvic problems, they just diagnosed irritable bowel, which is a common misdiagnosis, and still makes me cross, as I had no tests. I have a low immune system which is common. I think women should be made more aware of endometriosis symptoms and doctors should be too, then a great deal of this pain and suffering for women could be avoided. A scan would show an ovarian cyst or a build up of the womb lining which can be common and hormonal treatment could prevent problems x


Thank you for your reply Spice.

I'm so scared at the moment as I want to be able to have another child and feel myself getting depressed. My daughter is 11 this year and i haven;t been able to have any more children and suffered a miscarragie. Now that i only have one tube feel my chances are next to none with Endometriosis. I'm generally a very postive person but stuggling at the moment to remain upbeat, but finding this website has helped...knowing that i'm not alone and somewhere i can chat to pleople are know what i'm going through.


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