Endometriosis UK
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So Frustrated!

Hi there, hope everyone is as well as possible today. I apologise in advance but I'm feeling really low and frustrated today and I can't pinpoint exactly why. The pain is back again, it came on last night while I was at work and it has kept me awake most of the night. I'm back at work today and have a really long day ahead which I am struggling to face but I couldn't take more time off as I have already had so much off recently. My boss is really great and sympathetic about my condition but the wider company take a very strict stance on absences and I have already had to go through the absence management procedures. I just feel like crying today.

I'm also really frustrated by the lack of communication I have had with my doctors. I went back to my consultant in October because my periods hadn't returned after four months of finishing my prostap injections and also because, inspite of the injections, I was still experiencing the same pain I had been before the laparoscopy and laser surgery I had the previous January. He told me that I couldn't still be in pain and that it must be another kind! I couldn't believe he said that as I had told him that all of my symptoms were exactly the same but still he refused to believe me. He reluctantly agreed to send me for a scan to check for ovarian cysts and then discharged me!

I left that appointment in tears feeling that I had just been completely disregarded. My husband as usual was there to support me but even he was at a loss. I went for the scan and got a very brief letter afterwards telling me there were no ovarian cysts but I was still in enormous pain. We then had an appointment at the fertility clinic in February where they told me that the scan showed that my ovaries were very small as a result of the injections and then did various tests but even though I have chased them up twice I still haven't heard anything back from them about what our next steps will be.

Amongst all of this I have had 3 day 21 progesterone tests which have shown that I am not ovulating. The first test they phoned me with the results but the second one I had to chase up myself, only to be told when I phoned that no I wasn't ovulating and that I had been referred back to gynaecology who had just told me that I shouldn't still be in pain and discharged me! I feel like I am chasing and chasing and just getting passed from pillar to post with no real answers or explanations. I'm sorry to rant like this but I just feel so low with it all. I know my husband is fantastic with it all but I just hate laying it on him all the time. I hate him to think that I am so needy and down all the time. Sorry girls!

6 Replies

Big hug hun. You are not alone! I too have just woken from yet another particularly awful night, where pain repeatedly woke me. I was twisting and turning in bed, contorting with dreadful pain.

I sort of, try to stretch the pain out but it seldom works though I'll try anything. I have had repeat surgeries over the years for extensive endo and adhesions which glued fallopian tube stump to bowel, ovary to bowel the other side and had moved into my stomach round belly button.

I have been having horrible pain and accompanying symptoms involving bowel, low back pain, hip pain, right pelvic deep pinching and urination frequency which hurts, piles and leg pain and yesterday it felt like my legs and pelvis/stomach where filled with liquid concrete, every step hurt and bloating. Even wearing loose trousers with waistbands hurt. Today I am due to phone my Gp on the new system where the doctor calls you back and decides if you need an appointment.

I am so fatigued on top of all the pain and would far rather see the Gp face to face rather than explain my intimate and embarrassing symptoms over the phone. I fear I may need more surgery possibly radical but also have been told each surgery may well make adhesions worse! I know each time I speak to the Gp the closer I move towards surgery which is going to be 'hit and miss' which in itself is terrifying me. The whole endo adhesion thing is a nightmare that never ends.

Thankfully we as sufferers have one thing - 'each other'.


PS, maybe try and get referral to an endo adhesion specialist gyne or find a specialist endometriosis centre. Not all gyne's are specialists in the endo adhesion arena.


Pls go to your Gp and get a referral for a new hospital cos its your right to have access to good doctor who respect and understand your symptoms and not thinking you are faking it or its in your head. I have and still going through the same problem with my gyn but for the sake of my sanity I choose to get referred to another hospital cos I really don't trust my doctor cos I believe he is with holding my treatment and judging me cos I have other medical problem. Good luck and keep your heads high cos you are not alone.


Thanks for these suggestions girls, I'll give them all some serious thought.


Massive hugs and I hope your pain improves. I've been told that in the future I may need pelvic clearance, removal of womb, tubes, ovaries, cervix etc. but we're trying to conceive first. I don't want to take that option due to all the side effects, so when it comes to it, I'm going to look for a second opinion and a referral to a specialist centre. This site lists accredited endo centres. Perhaps you could get referred to one of these? bsge.org.uk/ec-BSGE-accredi... Dismissing your pain is neither helpful or realistic. Endometriosis comes back after surgery, and you can be pain free from anywhere from a few months to a year or two, if you had your surgery in January it could be feasible that your endo has returned and is causing pain already. It's also worth documenting what's happened so when you go to your GP you can have a real frank discussion.

Hugs and Love



after my op i had a awful consultation with the man who did it...before the op he was lovly after the op he kinda said right ive removed parts of u now off u pop....i was gutted i got mad and cryed he told me that the pain during sex is sex phycosis!!!!wtf!!....i soon left the room before i was escorted out..lol...i now have a decent gynae and no i dont have sex phycosis...i have endo....i dont think some of them know how much we rely on them...wen we dont know the answers or wen we start feeling new scary symptoms..i was looking forward to seeing him so he cud help me...he didnt he crushed me....and worse the prick made me doubt my self.xxx


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