Help and advise needed please

[Pureunicorn]

Hi I hope everyone is doing well that this strange time.

So a bit of background, I was diagnosed with stage 4 endo via laparoscopy in June, frozen pelvis (ovaries, uterus n bowel all stuck together) and they think it's gone into my bowel, I also have a rectovaginal nodule, I take paracetamol, naproxen, codeine and Morphine, and I'm on the depo injection, I was ment to see my specialist in April but this has been moved due to covid19, I was just wondering if anyone else has suffered any of these symptoms, I have been getting more and more headaches and a constant pain in my right side that not even the meds always help with, my hair has started falling out again too, I'm thinking of stopping the depo but I'm so scared of the bleeding and the pains that come with not being on it!! My doctor has emailed my specialist to see what can be done but I'm just so scared and I did hope to have more answers by now too, as I'm still very much in the dark about everything, I know I'm probably going to be having a full hysterectomy, I just need someone to talk too 😭

Thanku and sorry about the rambling x

[Moon_maiden]

Hi

Sorry you’re going through so much. It’s good the injection has helped with pain, bad about hair loss. I take it this is one reason for GP contacting the consultant. Have you mentioned the pain on the right side? It may or may not be connected to the endo. Are you drinking enough water? If your dehydrated headaches can start, eye sight or tension. Given everything that you’ve gone through stress can be evil for muscle aches. I used to get terrible headaches waking up, tested for sleep apnoea and since cpap they’ve gone.

At the moment I think I’d welcome a hysterectomy, if you’d asked me if Id ever have one a year or so ago, it would have been no. This doesn’t matter so much as I’d be past having children, for you this is likely still an option, let the consultant know what you’d prefer.

You can pm if you’d like to.

Hope the consultant replies soon, take care 🙂

[Pureunicorn in reply to Moon_maiden]

Hi thanku so much for ur reply,it means alot, yes the doctors have contacted my specialist about the headaches, hairloss and the pain on my right side, I've been suffering with the headaches on n off since having the depo but they are getting worse and more frequent, the pain on my right side is getting worse (already taken 3 lots of Morphine in less then 24hrs) I'm wondering if I've got a cyst (had one before that burst n ended up in hospital) the pain is getting worse as time goes on, I think I might have to call the doctors again if it carrys on! I've already said I'm happy to have a hysterectomy as I cant have anymore children due to the endo but I'm very lucky and already have 4 beautiful children. Have u asked for a hysterectomy now? How long have u suffered with this horrible thing? Again thanku so much xx

[Moon_maiden in reply to Pureunicorn]

Sounds like it doesn’t agree with you. It’s probably worth contacting the GP, check if heard back from consultant and see if they think it could be cyst, might be worth a scan.

It’s great you’ve had children, one less thing to worry about.

The letter to GP after follow up from lap suggests that surgery could be complicated so is hoping menopause starts and reduces everything. Possibly deep, but no one’s sure, also have enlarged uterus and fibroids. It’s likely a mess in there 😂, couldn’t find one ovary. Always had bad periods but managed until about a year and half ago, downhill from there. Only diagnosed December. It’s not a surgery I’d relish, but it’s got to be better than currently.

Let us know how you get on