Still no diagnosis!!

[Cutteridge74]

I am, like a lot of women, still going with no diagnosis. I had a laparoscopy nearly 4 years ago which ended with me having a catheter fitted for 2 weeks (1cm laceration in my bladder). I was told there was no endo but adhesions from my 3 c sections. My bladder was basically stuck to my abdominal wall. My symptoms are: very bloated days before period, a range in bowel movements, very painful sex, blood from the rectum on period days only, abdominal pain, sciatic pain and tiredness. I feel I have been fobbed off so many times. I also had an MRI which came back fine. I had a flexible sigmoidoscopy which came back fine, except 2 small internal piles. I was asked was I sure I only bled when on my period and when I answered 'yes' they just looked at me and shrugged their shoulders. My gynaecologist said she could add anymore but didn't want to discharge me, so I was left totally disheartened and questioning myself. Ironically as symptoms have got worse I was going to the drs to ask to be referred to a specialist, but have received another appointment to see the gynaecologist on 4th December. Not sure what to say or what/who I can ask for???

[StefaniaJW]

You need to see an experienced and higgly skilled excision surgeon ASAP. Ending up with a laceration in the bladder means the surgeon was not skilled or worse, there wasn't a urologist present for the laparoscopy. I can send you a lost of highly skilled, trained and experienced endo excision surgeons working within the NHS

[Cutteridge74 in reply to StefaniaJW]

Thank you. No a urologist had to be called in and he actually finished the operation.

[StefaniaJW in reply to Cutteridge74]

Who caused the laceration on the bladder? Clearly either an endo surgeon who is not skilled at all in removing endometriosis from the bladder or a shitty urologist. Either way, you deserve WAY better, that's why I suggested you contact me to get names of much more capable surgeons with extensive experience in complex endometriosis cases and fantastic reviews

[Cutteridge74 in reply to StefaniaJW]

She's a consultant gynaecologist. I haven't seen a specialist as they keep telling me I don't have endo 😔 I got the impression that the urologist wasn't happy and that's why he finished it. The names of the surgeons would be much appreciated I'm getting desperate to at least get a diagnosis as I feel like I'm mad. Thank you

[StefaniaJW in reply to Cutteridge74]

Please PM me as it's against privacy policy to name them here

[endokicker1]

I'm so sorry about all you have been through. You need to ask to see an Excision specialist. If you go on the BSGE website , you should see a list of accredited centres close to you. Specifically request to be sent to them. Some people say Endo cant be seen on scan or MRI if it isnt deep infiltrating, but many skilled specialists can.

I had to walk in to the A&E of the hospital which had an Endo centre and then got an appointment to get a scan done, and this was how I was first diagnosed. Not through my GP. So you might have to fight a bit more, but dont despair.

Also, you mentioned painful sex. I think a pelvic therapist will definitely help, so I think you should look for a good one around you, preferrably one that understands the effect of Endo on pelvic pain. This can be done while you wait for your referral.

Wish you all the best xxx

[Cutteridge74 in reply to endokicker1]

Thank you. Will definitely look at the list and go armed to my next appointment and I'll look up a pelvic therapist too. Again thank you for the information. Sometimes it just feels like your banging your head against a brick wall. Also I've doubted myself so many times and then thought no this isn't normal. 🤞🏻

[endokicker1 in reply to Cutteridge74]

I totally get you. You are not alone. Stay strong sis. Sending you lots of love xxx

[Cutteridge74 in reply to endokicker1]

Thank you ❤️

[Cutteridge74]

No they just referred me to my local gynaecologist which after the laparoscopy I asked for a second opinion, which I then got just a different gynaecologist

[Cutteridge74]

I'm in Cambridgeshire