Sick and tired and lonely

[KimPV]

Hi there.

So I’ve been in pain now for years and years, I was diagnosed with PCOS when I was 14 and just lived with the random periods. I’ve had surgery to investigate the pain through gyny. And have had cysts removed and adhesions. Last one was five years ago and the surgeon said he found nothing apart from my ovaries was stuck to my pelvis. Said my pain couldn’t be gyny related and that I should go to a gastro team to investigate my bowl. I was told years ago I have IBS too, but I don’t believe it’s my bowl at all. How can sticky ovaries be normal?

I’m now waiting to see the pain clinic as the consultant thinks my pain is in my abdominal wall. Again I don’t, I needed up in hospital a few months ago with suspected appendicitis, but the surgeon was convinced it was my ovaries or something as my hip was really hurting too, and I was lying in a weird position the whole time I was in there.

So now I am again waiting to see a gyny consultant.

I feel like a hypercondriat (spelling sorry) and it’s all in my head, I’m so tired of taking pain killers too.

Anyone had anything similar?

Sorry for the essay xx

[weekari]

Unfortunately, yes I can resonate with a lot you've described. I had lots of gastro issues & severe fatigue the past 4 years but never any period related problems. So not textbook endo. The last 1.5 years I've had hip & back pain. Like you, I've had the run around. Waited on gastro, gynae and orthopaedics waiting lists, the total wait amounting to over 2 years 😔

I wasn't very educated in endo but a gp thought it might be that and so I had a laporoscopy 2 years ago under general gynae. They found no endo and so I was discharged. I took their word for it, assumed they were the experts. But with my hip /back pain I later saw orthopaedics & had an MRI showing severe endo throughout my abdomen. Since this diagnosis a week ago I've been on here loads trying to find things out and doing my research. The key thing I've learned is that general gynae are usually not very well versed in endo. They don't generally know what to look for and can often over look it. There are specialist endo centres throughout the UK though and its here you want to be seen.

I'm realising endo is the under dog of illnesses and unfortunately (and ridiculously) we need to be as clued up as we can. It's been recommend to me that I get a GP who knows their stuff which is my next step. And I need to get myself referred to the specialist unit.

Don't let their lack of knowledge feed into your own doubts and make you feel like you're making this up. I did this for 2 years - literally believing all my problems were psychological and seeing a therapist for the past year to try sort that out. I believed it was all in my head! You know your body. Trust your instincts. And use this amazing forum. It's helped me so much this past week.

I don't know much but sticky ovaries sure sounds like endo!

I really hope you get the help you need and deserve. Xx

[KimPV in reply to weekari]

Thank you so much for your reply. It’s nice to know I’m not alone , and that maybe I’m not crazy.

How would I go about finding an endo specialist do you know?

Thanks again weekari

[weekari in reply to KimPV]

You sound definitely sane to me, just coping with a really difficult set of circumstances with little support.

You can search for your nearest specialist centre in this website bsge.org.uk/ hourly there's one near you. If you can't get to the centre then apparently we need to make sure anyone we see is a member of the BSGE to make sure they'll have the level of knowledge & experience you need. I only found this out from this amazing forum.

I'd love to hear how you get on with it. X

[KimPV in reply to weekari]

That’s great. Apparently there is a centre I. The hospital that my appointment will be in. I’m going to ask that they refer me there, if the consultant isn’t a member.

I’ll keep you posted x

Are you awaiting an appointment too? Now that they’ve said it’s endo?

Let me know how you get on x

[weekari in reply to KimPV]

I don't really know what's happening. I met with my GP yesterday & she didn't even know of the diagnosis & couldn't access the mri. She said she can't refer me anywhere until she's got all that. She hadn't heard of the specialist centre and was pretty unenthusiastic about referring me there & wanted to refer to gynae. But I've since read the NICE guidelines & know how that that's where I should be referred so I'm just waiting on her getting the official diagnosis info from orthopaedics and then I'll go back and tell her where to refer me. It's not like I'm exhausted & in pain or stressed or anything 🙄

honestly, it's been such a joke. It's pretty much been things like this since I first started getting investigated... Like one Dr telling me 3 days before Christmas that I had all the symptoms of ovarian cancer & I needed to get a laporoscopy urgently. Only to later be told that wasn't the case because it would be visible on my ultrasound. I believed I had cancer for 6 weeks. I've become ever so slightly less trusting of doctors! 😂

[KimPV in reply to weekari]

I know what you mean. The days when the pain is bad I try to hide it from my family as I feel I’m boring them saying it all of the time. I seem to be going around in circles rather than getting it sorted. I had an irregular smear and thought I had cancer too, has to be one of the worst feelings doesn’t it? This sounds awful but it’s so good to hear of someone having similar to me. It really is.

I hope your results come through soon, and well done for standing up to the drs. It’s scary when we have to put our trust in them , and we seem to know more sometimes. My mum always says, you don’t have to be good at your job. You just need to know how to wing it. Like most doctors right? Haha

I’m seriously thinking of pushing for a hysterectomy. I’m 41 have had all the kids I want, and am miserable and in pain and blehh most of the time..

Thanks for the chat. Has really helped me.

X