Mourning A Diagnosis….

Real patient experiences shared privately at  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

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After much personal speculation from myself over the years, March this year I was officially diagnosed with endometriosis. Sigh.

It was after a consult in December when I asked to have an appointment with the female doctor who worked at our local family planning clinic.  I had my routine yearly smear done there as my GP surgery was booked up until 2 months after. While chatting with the nurse (anything to distract away from the exam itself!) she said I had symptoms I should check out with a doctor as a GP apt doesn’t give enough time.  She suggested the consultant doctor there as she could give a full hour or more of attention and won’t be rushed through the door. I agreed and saw her 2 weeks later.

I had been in lots of pain pelvic area and other symptoms so she gave me a thorough exam, took blood and gave me a slip to get a u/s done. She also said she would be referring me back to the gynecology team at the hospital.

End of Dec I had my ultrasound. It was a usual appointment as she repeated the scans a few times and put me in some wacky positions while she tried to see things. Normally I eye ball the screen, but she kept hiding it from me which bothered me.

After the screening the doctor rang me to give me an update on the results and told she proceeded to tell me the scan results were unusual.  She said she would ring the hospital as things clearly were not being addressed quickly enough. The scan had shown what seemed to be a cystic structure, separate from my ovary and it was difficult to tell what it was actually attached to! At that time it was about 4 x 2 x 4 cm.

I saw the gynecology team who hypothesized it must be a hydro salpinx or an ovarian cyst (even though it was separate??) and said she would put me on the waiting list for a laparoscopy to sort it. Probably losing my fallopian tube. As I was in such pain I was told if the pain becomes unbearable I must get myself down to the emergency room and she would do emergency surgery.
TD Jan 2017-2
Fast track to mid-March. I am in severe pain especially my lower left pelvic area. My morphine tabs are not taking the pain or sharpness away now and this worries me. I ring my GP on a bad afternoon and telling her how bad and frequent the pain is she says to go down the emergency room. I ended up being admitted on two drips. I have concerned faces bustling about and I go for an updated ultra-sound where the radiographer said it seemed to be attached to my bowel. A ct scan the next day revealed the mass filled the left front to back pelvic space they talked about tumors and cancer. Emergency surgery was done that afternoon. I have never been so scared in my life.

Luckily no cancer. When she did the laparoscopy she first came across a huge mess of adhesions and she couldn’t even see what the mass was before getting rid of many thick adhesions. It turned out to be a large peritoneal inclusion cyst which she drained (and I still have no idea what it was or what caused it) and she also found endometriosis spots on both ovaries, left tube, bowel and peritoneal wall. She told me it was minimal endo but that confuses me due to the extensive adhesions? Also a loop of bowel was stuck/adhered to my ovary/tube/womb so was lucky I didn’t have a blocked bowel. I was quite a mess in there it seems!

Now nearly 6 months on the pain has returned and now especially in my lower left side. I have seen the consultant once and as I can’t take the birth control pill she wants me to try an alternative and is apparently arranging a date for her to fit it but I haven’t heard a thing. I don’t want the Mirena though. Not at all. I would rather try a pseudo menopause drug for 6 months. I think I need surgery again if I’m honest. I can hardly sleep now due to pain.

I thought I would be relieved to have a diagnosis but although it helps understand my symptoms better, the fact is it’s incurable and presents with so many challenges…urgh.

Anyone else go through a sense of mourning when diagnosed?

It’s has been a long time since joining TD. I have realized though that this website gives such wonderful support and the chance for me to support others and boy do I realize how helpful that is now and how much I need TD now through my journey.