Endo or not??

Hello everyone I have just came back from the gynaecologist who has pretty much said to me my symptoms aren't really that of endometriosis, altho she's sending me for a scan and a lap anyway?. I just would like to list my symptoms here if that's okay and would love some feedback on what you guys think. I felt she was dismissive and really wasn't listening to what I was saying at all. She has no idea the pain I've been suffering .

Pelvic pain (constant) but worse before during and after period

Blood in urine

Painful sex

Groin and hip pain which radiates down legs and round to back (sometimes I can't walk)

Heavy long periods with clots

Nausea

Diarrhoea and constipation

Oily skin/hair

Tiredness

Bloated stomach

Any reassuring feedback would be so welcomed right now!😞😞💔

27 Replies

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  • Maybe you doctors needs to look at the symptoms again because it sounds a lot like endo to me, take a copy of the attached to you next appointment nhs.uk/Conditions/Endometri...

  • Yes I thought so. I'm not going mad... yet anyway!! So angry all I wanted was some reassurance today as I had been waiting for this appointment for months. Feel deflated 😞😞

  • It sounds like endo to me too. I'd get a second opinion.

  • I thought so too. She had O interest. I'm going for a lap anyway but now I feel that if it's her that does it.. then she's not going to do it properly as she thinks it's something else! 😩 and she'll just fob me off! X

  • Hi. I have the same symptoms but I have found no and adnemyosis. Lots of info on internet about it x

  • You have adnemyosis? X

  • Hi sorry. Yes I have endo and adenomyosis x

  • If you're concerned, find another specialist to do it. The last thing you need is someone doubting you. I had the same problem, but with GP's. Luckily I was referred to a specialist (I didnt know what endo was) and she was like I think you have endometriosis from listening to your symptoms. I went for a diagnostic lap and she found it - your symptoms, most of them anyway match mine.

  • Your symptoms do sound like endometriosis. I'd try and get a second opinion.

    I'd be inclined to ask for a cystoscopy too just to cover all bases. I had blood in my urine and suffer with a lot of pelvic pain, so I requested a cystoscopy which showed that I have inflammation of the bladder too. This is still under investigation at the moment but interstitial cystitis has been mentioned to me. This can go hand in hand with endometriosis.

  • Thank you for your reply. I will ask for that if nothing shows up on the ultra sound. I have a funny feeling though that it will come back clear! I had one 2 years ago and it was fine too x

  • It could be because so many conditions have similar symptoms. Praying you feel better.

  • Yes it's so confused with other things that's the hardest part! Thank you for your reply x

  • Hello sorry to hear your suffering!! Personally I have all of those symptoms and have very acute endro! I would maybe push to see someone different but if there pushing for you to have a lap then you'll find out for def! My gynaecologist thought I had it but it wasn't sure... thought it might be a joint problem but once I had the lap it was obvious that endro was the prob! Just keep pushing them for that lap!! Best of luck xxx

  • It's so hard being in so much pain. My quality of life has went from 10 to O in a matter of months. That's the hardest part. Just even simple things like cleaning cooking and going to work. I am so grateful for the support from you and others on this thread 🙏 xxx

  • I completely know what you mean how it affects your quality of life...😔

  • This infurates me. After 10 years of misdiagnosis and living in chronic pain was diagnosed with severe endometriosis and ademyosis. Have had ablation and various procedures to be told there was nothing they could do as my organs were stuck together! My g.p sent me to bupa and within 2 months had a total hysterectomy age 38. 2 years paIn free. More endometriosis training needs to be done for this horrific disease.

  • I'm sorry you suffered also. I had a lap 5 years ago with similar problems and it was fine apparently. Unfortunately my symptoms have got worse, and progressed since. Funnily enough that's exactly what I was researching a few weeks ago private health care, as for some reason I knew this was gonna happen! Again! Yes I agree.

  • Tbh a Dr wont guess. The reason shes sending you for a scan and lap is to find out. If she said "yes its endo" and it turned out to be something sinister she could get in serious trouble. All Gynea problems have the same or very similar symptoms. Its why drs need to run further tests to rule stuff in or out. Good luck.

  • I do understand that however her words were 'I don't think it's endo' which got me paranoid it actually is something more sinister! Thank you and I hope it's not something more serious

  • In fact, blood in urine is a trigger for the 2-week referral to urology! Did you get that referral? If not, call call call. I was the same as you in January and if I hadn't demandes all tests and referrals, my 5cm endo nodule piercing my bladder would never have been discovered! I initially got referred to urology within 2weeks + surgery because they wanted to rule out cancer!

  • I was in and out I didn't get a chance to even say about the blood in my urine. I would love to see a specialist but I can't just ask for one can I? I hope it will be someone experienced this happened 5 years ago tho.. no endo found on my lap

  • Tell your gp about blood in urine they'll refer you to urology. That's what happened to me xx

  • sounds like endo and adeno to me!!!!!!! beware the scan has to be done by a endo expert: I had 3scans this year by a normal sonographer who saw nothing, a fourth one by am endo expert took 5seconds for her to exclaim OMG you have severe bladder endometriosis, adeno, and a functional cyst in your left ovary!!!!! Check out BSGE centre around you and DEMAND to be referred there! No normal gyne should attempt to do a lap when all your symptoms point to endo and/or adeno. Read the latest NICE guidelines to help you. Good luck 💪

  • Oh god I can’t believe your GP was not more helpful - I have had pelvic pain for a year and just had a laparoscopy which discovered a massive amount of adhesions on my bowel and appendix plus endometriosis on my ovary but ct scan and ultrasound showed nothing don’t leave things - press for a laparoscopy hon x

  • Unfortunately this was the gynaecologist. It would have been much easier if it was the GP. Xx

  • I should have a look at the ESHRE and NICE guidelines that underpin endo diagnosis and treatment. The former details the symptoms for doctors which are so often missed and the latter makes it clear that you must only be referred to a gynaecologist with a special interest in endo. This was already clear from NHS literature and is so important.

    eshre.eu/Guidelines-and-Leg...

    nice.org.uk/guidance/ng73/r...

  • Thank you so much. I have read these guidelines and I will he now fully equipped on my next visit to the general gynaecologist.

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