Diagnosis

[Bloatbaby]

18 months into my gp appointments and two USS later and told I have an endometrioma but no gynae appointments available to even discuss my diagnosis and treatment options etc I dread to think how long the list will be when I final see someone. Has anyone else had this? I am looking to go private but scared of the expense and being in the military they have to agree to it being private. Its causing me to have time off work quite regularly though so I hope they agree. Anyway just general advice in the interim will help me. I'm on mefanemic acid only as codeine and laxatives are making things worse. Sometimes help sometimes doesn't. I'm having physio on back but that doesn't seem to be helping...every night I have broken sleep due to back pain. Don't get me started on the bloating. Anyway any advice, help is gratefully received 😕

[Booty42]

Oh no that's awful. It doesn't fill me with hope, I have a 6cm endometrioma after two USS this last week and waiting to see Dr in 2 weeks but I might be in the same boat as you and have a long wait ahead. Did you have any other issues? My CA125 came back high. Also how big is your cyst? Are they keeping a monitor on it to check its not getting too big?

Private to have it removed is thousands.

Hope you hear off gynae soon

[Bloatbaby in reply to Booty42]

THi thanks for replying, I had a High CA 125 also and I have also had a hpv positive too but with no cytology which means they won't do another smear for a year. I am quite worried that I've not had chance to chat with anyone about it since Jan but you just have to get on with it don't you. Yeh I'm the same with ovulation pain most of my pain comes after my period but my back seems to be pretty much constant. Let me know how you get on. Mines 4.5 and was the same on the 10 weeks before x

[Hidden]

I have an 8cm endometrioma found on MRI in January and I have to wait till October till I see gyn to discuss "options" I'm so upset, I have a mix of symptoms. I take mefanamic acid 7 days on 7 days off (period and ovulation pain) and take paracetamol on top of this daily and still ahve to curl up with a heat pad every evening.

I have no advice, the waiting sucks and I have no option for private unfortunately. You have my understanding and sympathy.

[Bloatbaby in reply to Hidden]

Thanks for your reply, yeh it seems like GPs don't know how to manage us until we get that follow up to discuss things. I don't want hormone treatment I've been off hormones (the pill) because they played havoc with my moods and weight. The bloating for me is the worst...I can't eat I'm so bloat for at least a few days a month even with pain killers. Very small amounts, I'm currently researching diets and alternatives to medications and treatment but there's so much rubbish out there it's hard to see the wood from the trees. I hope October comes around for you soon x

[Endolemon in reply to Bloatbaby]

I am eating gluten free, lactose free, no meat, no alcohol . And it helps me a lot xx

[Hidden in reply to Endolemon]

I'm reading into the antiinflammatory diet, I'm already df and I know gf replacement foods are worse for my digestion (son is coeliac) so I mostly eat whole food plants I agree I think I feel better without dairy for sure

[Booty42 in reply to Hidden]

I thought mine was big at 6cm, one of my biggest worries was it will burst (more common if over 4cm). Out of interest did they do the MRI following findings on USS or did you see gynae first and then referred for MRI?

And yes your right the waiting is sucks!

[Bloatbaby in reply to Booty42]

I've nit been referred for an MRI at all...I was just told at the ultrasound that that's what it was and that's all I've had. I've had a letter from gynae saying I've been referred but they have no appointments and that I just have to wait x

[Hidden in reply to Booty42]

I had us and tvus in November they found a 4cm 'cyst' go sent me for MRI, I waited 2 months for that. They found the cyst had grown to 8cm and was an endometrioma and I had a 2cm tumor, saw gyn oncologist and they declared it benign after a blood test so back on normal gyn wait list. I can't imagine how big it'll be by October!