Why can't they find anything?: I feel like... - Endometriosis UK

Endometriosis UK

50,140 members41,492 posts

Why can't they find anything?

Clyders1
Clyders1

I feel like I'm going insane. I've been battling a pain in my lower right side for well over 10 years. I was diagnosed with ibs at 16, I'm now 40 with 2 children and had 2 ectopic pregnancies between them . The ectopic pregnancies were both in the right tube and in February of this year I shade the right ovary and tube removed as I was having debilitating ovulation pain . The ovulation pain has stopped but I still have pain in my right side, I can pinpoint the exact spot and over the last three months my periods have been Excruciating, on the couch fists clenched, crying out in pain, large clots and heavy bleeding. OTC drugs do nothing. Recently had another ultrasound that showed nothing. Have had exploratory laparoscopy performed 2 times where they found nothing. I can't deal with these cramps anymore, it's affecting my entire life. Any ideas? Anyone know anywhere in Ontario Canada I can contact?

8 Replies
oldestnewest

It sounds like you are going through hell. My 18 year old daughter is going through the same thing and Doctors can’t find anything. She had three lupron shots with the first one stopping the pain for one month then it never helped again. She just had the Merena IUD put in and six weeks later the pain is still so bad with heavy bleeding and huge clots. We were told it could take three months to work .

I don’t know what the answer is .

I hope you get some help.

Clyders1
Clyders1 in reply to Angellouise

When I had my ovary removed the doctor talked briefly about birth control and iud for the pain but was concerned about side effects at my age. I'm planning to call my regular doctor in the morning and demand a referral to a specialist, maybe that will get me some answers. Hopefully they find help for your daughter, this is no way to live and I can imagine it's agony for you to watch, I still call my mom in tears from pain and aggravation, my best support as I'm sure you are for you daughter! I'll keep you posted if I get any answers!

Angellouise
Angellouise in reply to Clyders1

Thank you and good luck

I had one laparoscopy where nothing was found, luckily I had a second lap with a better team who found endo.

Has anyone mentioned adenomyosis to you? I had that possibly found on MRI (it can only be confirmed 100% after hysterectomy). It has very similar symptoms to endo but often can’t be seen even at laparoscopy because the tissue is within the walls of the uterus.

Otherwise, it is possible your endo has just been repeatedly missed.

I actually just started reading up on adenomyosis yesterday! I'm calling my doctor tomorrow morning to demand a referral to a specialist. I'm done dealing with this with no answers. Fortunately I've had 2 beautiful children so if a hysterectomy is needed I'm ok with that. Thanks for your response, hopefully if I'm more demanding I'll see a better team who can figure this out!

I could have written your symptoms as this is my problem (right sided pain) which landed me in hospital along with weight loss and feeling really ill. They thought it was my appendix however it wasn’t. I was then referred to gastroenterologist who confirmed functional bowel disorder. It was this consultant who also referred me to gynaecology to have an MRI whereby I was diagnosed with adenomyosis.

I am in Scotland so can’t give you any ideas on who to contact in Canada but please pm me if you need a chat.

I suffer labour like pains and I am put on morphine, very heavy periods which come though my sanitary towel, pants and trousers, right sided pain, bloating. It’s awful x

Hi,

It seems you are having a hard time. I live in Montreal and I know there is an Endometriosis Network website in Canada. You can check the list of specialists by province.

endometriosisnetwork.com/

I hope it helps.

Update

I saw a new gynecologist on Tuesday and she is starting me on Visanne to see if this will help stop the heavy bleeding and reduce the pain. I'm hoping this will be my answer but not optimistic!! I don't like the thought of taking pills but I'm willing to try anything. She has also suggested pelvic physiotherapy? Anyone tried this before?

You may also like...