Need advice/support

[celticwhippet]

Hi there,

I'm 27 and currently unable to work due to pain/flare ups I've been having.

Last year my flare ups began getting worse so I began to go in and out of hospital. They noticed I was having cysts on my ovaries. (May 20) Eventually I was seen by gynecology at my local hosp and after examinations they suggested possibility of endo. So they put a coil in (Oct 20) before having any diagnostic Lap. (Coil was inserted under general due to the pain)

After another flare up put me in a&e (Dec 20) I had a scam with my consultant who showed me on the scan my left ovary was small and stuck to the back of my uterus at the same time my right ovary was 10cm with 2cm cyst on it. My consultant said that that's endometriosis. So she puts me down for a lap.

After experiencing numerous pelvic infections from the coil (Feb 21) I had my coil removed. So it was fitted in for 3 months. Around the same date my consultant told me the struggles I'll face for having children too. This was distressing.

Again after another flare up and pain predominantly on my right side (April 21) I was given an emergency laproscopy. They removed my appendix and popped a small cyst on my ovary. The whole procedure wasn't a diagnostic it was to remove my appendix. They said they didn't see any endo this time*

Since my removal of appendix my pain lowered it was suggested that the coil hormones had calmed any endo, this would have still being happening during my lap. Anyway (July 21) I get a phone call off my consultant for a diagnostic lap. I'm thinking great this will be more thorough.

2 days later I recieve a phone call to say it was cancelled. In the meantime I was in hospital again with a flare up. I agreed to have a meeting with the consultant to see what was going on.

I'm in alot of pain aand the consultant tells me she's cancelled the operation because they saw no endo. I explained to her that they were only going in to get my appendix as it was a gastro team. She wasn't agreeing and was being passive aggressive with every answer she said its possibly my bowels hurting me (I've never had issues with them) . While there she did an ultrasound as wasn't very thorough. I told her pressing hurts she said yeah its probably your bowels.

She then ends it and proceeds to tell me that she's putting a stop to me being seen by gyny as she believes it's my bowels. I begin to get distressed. I'm in pain and nobody is listening to my symptoms. She emails my gp to tell them to suspend gyny treatment. She then tells the gyny staff to send me home still in pain with anti inflammation meds (not suitable for gastro patients)

From here we now have pals involved. My mum and I are having a meeting with said consultant on why she told me all this stuff to say now it's my bowels. Head of gyny is seeing me too as 2nd opinion.

I'm wondering if anyone has experience anything similar with their care?

Can it take more than one lap to get a diagnosed too?

Thank you x

[CryBaby91]

Hi celticwhippet, I'm so sorry you've had such a horrific experience with the hospital. Sadly yes, that's very similar to lots of people on here who have been to their local hospital for treatment with endo. It's a very misunderstood condition and not enough gynaecologists understand it, most don't have the proper knowledge as they are not specialists in endometriosis, they then end up leaving people like us in excruciating pain thanks to their ignorance!

Is the gyne you saw a BSGE registered endometriosis specialist? You can check this by searching the BSGE register (there's a link on here in the links section) and seeing which hospitals are registered near you. Just enter your postcode and the list will do the rest. If they are not specialists then you would be best off getting a referral to one that is, as they will be best for dealing with it effectively. A poorly educated gynaecologist can do a lot of damage to a woman with endo!

I've ended up paying to see a specialist privately, he saw me once and wrote to my GP to arrange an NHS referral so I could have my surgery done for free. It sped up the process massively and I was taken seriously for the first time in over 10 years. It was the best £170 I've ever spent! Just make sure any specialist you see is on that BSGE register and also has an NHS practice so you don't have to continue paying for treatment.

All the best! Xxx

[Nikkky in reply to CryBaby91]

You are so right about poorly educated gynae’s doing a lot of damage. I think they realise they are out of their depth but don’t want to admit it to the patient- therefore they patronise and make you feel like you are a nuisance. You start to question your own judgement. Also, when you’ve had a bad experience/consultation it delays you seeking treatment as you feel nobody is going to believe you. It’s awful that women are still being treated so badly and we really need to be speaking up about it.