Can someone help me please

[Sara0102]

Hi all .So I have been having left pelvic pain ... Bum ache back ache legs ache .. and pain the morning after having sex ... I had a CT which showed nothing and on ultrasound was jus 2 cystic areas on my left adnexa ... I'm really suffering every day I been to hospital again today but they said to wait for gynae to contact me... Can anyone tell me there symptoms because I am convinced I have endometriosis.... Thr middle/left pelvic pain is unbearable scams r mainly clear except the 2 cysts on my adnexa areas.... Gynae is fobbing me off.... Please can someone tell me there symptoms I jus Wana see if they match mine xxx thanks all

[MangoStickyRice]

Thank you for sharing. It’s frustrating isn’t it when they dont seem to understand the impact it’s having. I have these symptoms:

Pelvic pain during (and after) intimacy or arousal

Pelvis pain randomly

Random bleeding (including 5 months continuous bleeding at one point)

Heavy periods with extreme cramping

Nausea and dizziness

Pain down arms/legs and up back to shoulders and neck

Numbness/nerve pain/prickling around body inc face

Cold/hot/wet sensations

Tightness in chest/neck

Headache/migraines

Bleeding when passing bowel moment

Fatigue

Aching

Pain when bending or when sitting down (mostly left side of pelvis)

Loss of sleep

Fever-like symptoms

I’ve been fighting for help for 2.5yrs. Saw a gynae consultant yesterday after starting from the start (GP) for the 3rd time. I’ve had three internal and external ultrasounds, cryocautary of the cervix, identification of ovarian cysts (since gone), laparoscopy and CT scan, plus a trip to A&E. All scans and lap showed nothing other than the cyst ages ago. Yesterday I was told to park the idea of Endo as the laparoscopy would have shown it if I had it and that ultrasounds would pick up adenomyosis if I had that. She’s suggested my symptoms are due to spasming of the bowel and/or bladder. Starting a trial 3 month course of medication to see if it helps - if it does then it indicates bowel/bladder issue but I don’t feel like it is. I have zero issues in the bathroom other than bleeding from the front after passing a bowel movement. I guess it’s worth a try if even to illuminate a possible suspect. If it doesn’t work, she’s suggested three months of HRT with the aim of identifying if the issue is gynae related.

My husband and I are discussing starting a family but symptoms are worrying both of us as we don’t know what the cause is and the pain is so bad. Gynae consulatant said to just go for it as the medication she’s prescribing can still be taken if pregnant but it seems like a really irresponsible thing to do considering I have no diagnosis and no idea if the medication will work - plus HRT wouldn’t be an option if trying to conceive… SO confusing.

I hope you find some answers soon, I completely understand your frustration. You are not alone.

[Sara0102 in reply to MangoStickyRice]

Thanku for a detailed reply.. I am back in a&e coz I cannot even look after my kids.. I was only here yesterday and now it's 740am I'm back in here I will refuse to leave until they decide to sort me out.. I can't feel like this anymore it's.horribke and these people don't seem to understand at all....

[MangoStickyRice in reply to Sara0102]

I’m so sorry you’re going through this. You’ve got to do what’s right for you - only you know what you are going through.

It’s the waiting in-between appointments that gets to me. The one I had yesterday was booked for May on the NHS. I decided that I couldn’t wait that long so enquired as to how much it would cost to be seen private (same hospital, same consultant). £200 and I was seen two working days later. I’m lucky enough to be able to make a decision like that and appreciate the many out there wouldn’t be able to pay.

Do let us know how you get on. Stay strong and keep fighting!

[Sara0102 in reply to MangoStickyRice]

They booked u in may to see a gynae????!!! That is bad... I will see what they do today if not I think il go private aswell...

[MangoStickyRice in reply to Sara0102]

Yes, 5 months wait that one would have been. I’ve waited longer for others. Ultrasound results were almost 6 months wait. I remember thinking how out-of-date they would be. Many sleepless nights…

If you go private for a consultation you can always then ask to be put in the NHS waiting list for a procedure if it’s needed - it just means you’ll be a few months ahead in your battle. Little wins and all that

[Sara0102]

Woooow.. that's bad IV jus been referred to the gynae ward I doubt it they will do much for me here aswell