Gynae refusing to see me

[Dee11]

Hi all,

I hope you don’t mind but I really needed a place to have a bit of a rant and thought here might be a good option.

Briefly, I’ve had all the symptoms of endo since I was 15. After years of Doctors and hospital visits they eventually said they were convinced I had endometriosis but didn’t want to do a laparoscopy due to my age (by this point I was 21). This year in June they finally done a lap as my symptoms were progressively getting worse.

During my lap they found lots of scar tissue which was lasered off, and also lots of adhesions which had actually fused together my bowel, ovaries and a few other organs, so they cut these away to separate them again. They said no endo was found but didn’t give a cause for the scar tissue or adhesions. I wasn’t given a post-op appt. They also gave me the mirena coil during surgery which made me bleed for about 6 weeks straight and I’ve had no bleeding since other than 2 clots about a month ago.

My recovery took a bit longer due to my wound being infected, getting a kidney infection and then also catching chicken pox (for the third time... how is that even fair?!). My GP and nurse were surprised to hear that no endo was found as they both said they would have put money on me having it due to my symptoms. I got maybe two weeks of no pain and then it hit with a vengeance, mainly in my lower right side and spreading into my middle.

I’ve been back and forward to the doctor and after waking up one morning being physically unable to move myself in bed and needing help from my dad to actually get out of bed (which is mortifying at 24!), a lot of shooting pains and enough rectal bleeding to turn the water in the toilet completely red, my GP told me to get myself up to A&E due to the severity.

One doctor tried to tell me the rectal bleeding was due to IBS which I’ve never been diagnosed with, and while I was in hospital they started me on Mebeverine tablets which made me run to the toilet constantly so these were stopped after I came out and my bowels have been so much better since stopping them.

While I was in, I was admitted to a general surgery ward and the doctor there made an emergency appt with gynae as she believed it was a gynae issue due to my history. I got moved wards in the middle of the night and when I told my new ward about the appt the next morning the nurse said that because she wasn’t my nurse and it was someone on break that she didn’t know anything about it but that my own nurse would have made arrangements for me to be taken up to it. They completely missed the appt. Needless to say the doctor who made it was furious and said one had to be made for the next day. I also had to go for an ultrasound which again they missed and I had to get at a much later time than stated. After my ultrasound they said they couldn’t see anything, and that they were having trouble getting another appt from gynae due to the time of day.... now by this point it was after 5 in a Friday and they said the secretaries were away home which is fair enough but they’d mean to be trying to get another since Thursday?! They sent me home to wait for an appt because they said they would mark it as an emergency one and so that I wasn’t stuck in hospital over the weekend. I asked if I stayed in would I be seen quicker and they said no so I went home to get a decent sleep... and decent food.

That was at the end of September. I’ve now just found out that not only did they forget to send the referral to gynae, but when they eventually did last week, gynae are refusing to see me saying it’s not a gynae issue?? I’m really concerned that the first doctor who told me had ibs pains has put that in my report and it’s that which is putting them off, despite every other doctor there telling him it wasn’t and sounded more gynae related.

I’m in constant pain in my right side. Taking Tramadol and paracetamol and it’s only just bringing it down to a more tolerable level. I’ve been off work since the end of September after being off 6 weeks over summer so I’m obviously a bit stressed about that, and I feel like I’m scared to make plans because I always have to cancel due to the pain.

I’m sorry, I just realised how long this post was but I’m just feeling so rejected that I had to get it out somewhere. I can’t believe they’re leaving me in this pain and doing nothing to help me. I’m seeing my GP today to try and get advice on what I can do now but I feel like all I want to do is sit and cry 😓

[Dee11]

Thank you so much for such a detailed response! I really appreciate it.... I think I got to a stage where I’m just so emotional with it that I couldn’t even think about where the best places to look were.

I’ve got a good bit of time before my appt still so I’ll read through the links and info you have provided so I can go in with a bit more knowledge. I didn’t really know much about deep endo and that it could be under scar tissue so that’s really interesting to hear. I honestly think you’ve given me more info and consideration in one post there than Doctors have given me in god knows how many visits!

[Starry]

Oh my, that all sounds horrendous, and I empathize coming down ill after surgery, I spent a week in hospital with viral meningitis 4 days after mine.

It sounds like you might benefit from a second opinion from a BSGE endo centre expert it's entirely possible that your general gynae misssed Endo in the lap. Your GP might be able to refer you as a case where surgery has failed to improve your symptoms given the suspicious nature of the adhesions or else you could look into a private initial consult with a BSGE Consultant with a view to then going on their NHS list if they agree that's the right thing.

Hope this helps x

[Dee11 in reply to Starry]

Hi Starry,

Thanks for the reply. So sorry to hear you came down with viral meningitis, that must have been awful! I can’t imagine going through that as well as usual recovery.

Thanks for the advice. I think I’m definitely leaning towards trying to get a private consultation of some kind. I know it’s expensive but I think with the pain that I’m currently in it might be worth it x

[Starry in reply to Dee11]

Thanks Dee, yes it's been a rocky recovery for me, the 3 lumbar punctures were agony.

I'd definitely recommend private. I've had a good experience, but was lucky enough to have taken out insurance 9 months earlier when I moved employer