functional abdominal pain

[bee109]

Feeling fed up and quite honestly like I'm going mad. Now I'm thinking maybe i have tried to make my symptoms fit endo and maybe it is in my head. Painful periods, painful sex, ongoing pelvic pain - frequent urination, which all started once i stopped the pill which i had been on since i was 14

After another evening at surgical assessment to rule out appendicitis, they have referred me to gastroenterology and are querying functional abdominal pain. Ultrasounds are clear, lap last year was clear (although it was a usual gynae and only in there 15 mins), blood are clear. The "only symptom" is excruciating pain - when they were scanning me I was sobbing.

Spent most the day sobbing that my worst fears are true and medics think I'm imagining it. Has anyone else been told they have functional abdominal pain?

[bertie1606]

Hi, I don't think you are trying to make your symptoms fit endo, you have endo symptoms. Functional Abdominal pain is a gastroenterology issue, not a gynaecology one. If I were you I would ask for a second opinion and try and get referred back to gynaecology. Functional Abdominal pain does not cause heavy bleeding or painful sex. It might not be endo, but it definitely sounds gynaecology related and need further investigation by them, not gastroenterology x

[bee109 in reply to bertie1606]

Hi thank you

I have been under gynae - it was them who suggested endo - but my lap was clear - although they caveated that with "just because we didn't see it doesn't mean it isn't there". They wanted to try putting me through the menopause - but were trying for a baby so I have delayed it.

My flare ups result in pelvic and abdominal pain - this flare up coincided with my period (which would fit endo, but then i think am i trying to make it fit). I'm going to make an appointment with the GP - ask for CT/MRI and ill take the gastro referral - just in case.

I have had some sleep now and the flare up has subsided (now day 3 of my period)

[Stanleigh]

I have been investigated for 3 years now with the same issue. I have the most painful left ovary. All the same symptoms as you. But clear lap, clear mri, clear ultrasound.

My gynae dr said we’ve tried everything and I refused to just let it be. I am in pain and symptoms fit endo.

I am now taking the Zoladex injection. It’s meant to reduce the symptoms. Maybe ask your dr if you can try this?

I completely and utterly understand your pain and anger. 3 years and I’m not diagnosed yet. Wondering if I’m making it all up. But it’s real. And you have to keep on fighting.

Always here for support xxx

[bee109 in reply to Stanleigh]

My gynae consultant suggested I try zoladex -but we are trying to conceive; although no joy for 3 years!

The severe pain has subsided now (adding to the thoughts of maybe its in my head) but then my period has also subsided - its like a constant argument in my head of maybe im mad - no im not - maybe i am...

How's it going on the zoladex?

[Stanleigh in reply to bee109]

it’s defo not in your head. My gynae dr said some people are never diagnosed and have this pain.

I go through waves where it can stop hurting for months and I’m like oh maybe it was nothing but then have months of a constant pain. So it’s worth fighting for

I’m only 16 days in. So now huge difference as of yet. But praying it works!

[CryBaby91]

Hello lovelies, I'm hoping that you and the other people who are being ignored can read this and feel better.

First, THIS IS NOT IN YOUR HEAD. Pain is not in your head. You are not being dramatic, you are not "making it fit endo". Any doctor suggesting this or making you feel this way is gaslighting you and contributing to the problem that means most diagnoses take up to 10 years. Clear laps with non specialists are very common, because endo can be very hard to see, it can be different colours (including see through!) and it can hide in so many places. Clear scans with non specialists, also sadly common. Endo is hard to find on scans, if a specialist does it then it can be easier but even then it doesn't always show everything. Deep Infiltrating Endo (DIE) is something that can be seen on MRI, but only with really really professional eyes. Which sadly, our NHS has few and far between.

Symptoms wise this all absolutely smacks of endometriosis, and when other problems have been ruled out they absolutely should be considering a working diagnosis of endo. Are you in a position to visit a specialist privately? It may cost a lot but the diagnosis would be worth it.

Personally I suffered from around 10 until 30 before I got my diagnosis. I was told all the same things as you, that it was in my head and all my tests are clear so i was "fine". Getting my diagnosis was so validating, and I felt simultaneously very angry at all the doctors previously who ignored my symptoms. Painful sex should never be ignored, painful periods are not "normal", pain outside of your cycle is not normal.

Keep pushing for answers, you are not crazy. Xxx