Still waiting for gynae appointment.

[JAJ27]

Hi all. I never join online groups, etc. I’ve been suffering for 3 years. I’m still on the waiting list for an initial gynaecologist appointment as my doctors have no idea what’s wrong as they thought I had a cyst then hernia but I have neither according to a CT scan. Now the doctors think it’s endometriosis. When I had a blood test it initially came back as high CA125 I then had another blood test that came back normal. The pain has become unbearable and it’s just at the bottom of my stomach on the right side when it flares up. To get out of bed it hurts, bend over to brush my teeth, when I cough. It’s a strange pain dull but at the same time like a hot poker. And when I do have a flare up I have zero energy. Anyone have any advice or anything please....... xx

[Moon_maiden]

Hi

Have you spoken to gynae appointments to make sure your referral has been received. How long since the referral?

Has GP sorted any scans to rule other things out?

I know it shouldn’t be this way, I paid for a consultation in the end as I wasn’t getting far with NHS. At least I saw the consultant and not a registrar. I don’t think I’d have had the right diagnosis if I hadn’t gone this route.

[JAJ27 in reply to Moon_maiden]

February I had a recognition of referral letter. I’ve spoke to my doctor and it seems to be out of their hands until a get some sort of diagnosis/ hospital appointment. If you don’t mind me asking what was your symptoms/diagnosis? Thanks for the reply.

[Moon_maiden in reply to JAJ27]

If it was me I’d chase it up, there should be a telephone number on the letter. I’ve micro managed a lot this year though 😂

End of 18, had horrendous pain, black stools, went to A&E, turned out period started when there, said UTI and went home.

During 19 had frequency throughout and pain, abdomen and back. A couple of times UTI and they said kidney infection. After a scan of kidneys and bladder it showed enlarged uterus and fibroids, nothing anywhere else. By this time I realised the frequency was due to sitting upright at work or driving. I insisted on referral to gynaecology. This came back with an appointment to urogynaecology, I decided this was wrong and went private. He was great.

It doesn’t have to be out of GP hands, they can message and chase if they decide to. Their system allows messages to be asked. It is quicker to phone the department though. I’ve learnt a lot this year 🤣

[Fmcc24]

My pain is similar and its been 2 years. A constant right hand side pelvic pain that feels dull but radiates down my back, thighs and groin that just mentally and physically drains me. At the same time if the area is touched during sex it hurts like hell. Even the scan was unbearable on that side. Always on the right hand side that starts with my period and goes after ovulation and then I get a week or so break until my cycle starts again. The scan found functional cysts but they said they shouldn’t be causing this type of pain every month.

They want to scan again before referring me to the gynae. In the meantime they have put me on the pill 🤷🏽‍♀️ I haven’t been on it for 8 years but so far 5 days into this cycle and not a pain yet, I don’t want to speak too soon but I just hope they will still refer me and not accept the pill as a fix given I do want to try for another one day.

[PurpleSynesthesia]

Welcome to the group (I very recently joined too).

There are so many helpful ladies on here that have given advice. Just to be listened to, taken seriously & reassured is such a relief.

I could have written a lot of your post.

I last saw gyne in March.

It's since transpired that that's where my treatment stopped, as the future treatment referral was never sent off, & notes have been lost (??). I only found this out because I asked the GP surgery for the gynaecologist's number from a letter that I didn't receive a copy of.

I've been going round in circles trying to chase it all up and I've pretty much given up on that avenue - but I've now done some (informed) research & have found a BSGE centre fairly local to me. I'm going to see if my (ignorant) GP will send a referral, but if not, I will scrape together some pennies & attempt to get a private consultation. I have no official diagnoses yet.

Last night was the pinnacle of pain & I was close to going to A&E. It has eased considerably this morning & I just feel like there's been a football match in my abdomen & like I've done some HIIT leg exercises, whilst heavy lifting. Drained is an understatement.

Unfortunately, it seems that us ladies have to be very proactive in directing our own treatment plans, & fight yet another battle, as well as the painful ones we're already immersed in.

Don't expect gyne to get back to you soon/ at all - I'm tempted to think that lists have been deliberately lost during the lockdown.

Don't give up, keep asking things on here, research & look into BSGE centres near you. All the best xx

[Violet159]

Do you feel that your symptoms are worse now than they were when the GP referred you? If so, you could ask your GP to write an expedite letter to the hospital, asking them to increase the urgency of the appointment. This worked for me recently, might be worth a shot? Xx

[JAJ27]

Thanks all. My other half says go to the toilet 🤣🤷🏼‍♀️ when I say my stomach is killing me. Some people just don’t understand! I’m just so annoyed and fed up of not being able to be the best version of myself because of this pain and drained feeling. With no end to it insight.