Endometriosis

[Adeno2020]

Hello all hope you’ve had a lovely Christina’s and making the most of there situation this new year ...

Haven’t posted for a while.. I have been told for 3 years now that I have suspected endometriosis I have pains that double me over, I constantly bleed throughout the month even though I’m on double dosage of the pill, I suffer with thigh pain calf cramp and lower back pain extreme headaches. 2019 I got a diagnosis of adenomyosis and feb 2020 had an ovarian cyst removed that returned only a month after. I’m having a bad time again at the moment I only stopped bleeding week before Christmas and I know any day now I will start again! I’m due to speak to gynae next week and really want to push for the lap as I need this weight lifted off my shoulders too know if it’s definitely endo. Although I’m nervous they’ll say they can’t find anything. Are my symptoms similar to anyone else’s ?

Headaches

Pelvic pain( said uterus is on fire or if s about to fall out) double over most time

Ovarian cysts (sometimes I just know if I have one as get sharp shooting pains whichever side)

Thigh pain and leg cramps

Lower back pain

A lot of water infections (constant feeling of needing a wee but nothing)

Sometimes when opening my bowels and I’m bleeding I have a sharp pain up my bum that shoots me off the toilet

Please tell me you recognise these symptoms?

[MrsMarlene]

Hi! We have all the same symptoms, you poor thing. I also get painful bloating, migraines and diarrhoea from food intolerances I've never had in the past. What painkillers are you on? Have you ever try CBD oil?

[Adeno2020 in reply to MrsMarlene]

Yes I get bloating too it’s so horrible! And I just always doubt that it’s endo because gynae swell... you know what they’re like make it out if it’s in your head... I’ve had tramanix acid, mefanamic acid, codein and now transformed I’ve never used it you had good experience?

[Moon_maiden]

HiCertainly recognise some of those. Most of the time when I though I had infections it wasn’t when tested, probably 30% were, but kept going back so many times. Lots of bowel issues.

You’ve got some good notes in your post, but write everything you can think of, if you haven’t been on the endo uk site great info about consultations.

Did they tell you why they would do a lap previously?

[Adeno2020 in reply to Moon_maiden]

So basically I had my ovarian cyst removed as it was leaking into my pelvis but because it was 4.5 centimetre and not above 5 general gynae refused my sugery so basic surgeons dealt with me. My gynae said due to having lap beginning of thts year and nothing was found.. but I said it takes a specialist to notice endo not basic surgeons your every day/problem surgeons! She also examined me inside my gynae did and told me she could feel endo?

[Moon_maiden in reply to Adeno2020]

Good going 😀 that wouldn’t have been easy to say and push for. They definitely need to know and be confident with what to look for. You do need to know, I went through with lap to find out, and generally think I’ve been lucky with the first consultant I saw. Not sure why it becomes so important but it does 🙂

Bit picky about the cyst size weren’t they, all it’s done is leave you in pain and cost NHS more money.

🤞 you get the right checks and lap. The more printed info you go in with the more they’ll go ok, it’s worked with GP 😂 they didn’t want the bother of looking at it.

[Adeno2020 in reply to Moon_maiden]

Yes gynae sent me away three times for my cyst then it ended up being an emergancy op I was operated on within 12 hours. My appointment next week is a telephone consultation which is annoying! Doctors make you think though your putting pieces together yourself. But she ya actually told me that she’s 90% sure it is endo but need the 10% on the paper 🙄

[Moon_maiden in reply to Adeno2020]

If doctors were more forthcoming we wouldn’t have to put pieces together 😂That’s a very positive percentage, the first consultant I saw was sure it was, but you still need a lap to confirm.

See how the call goes, if you’ve got someone with you maybe have the call on speaker so there is another pair of ears in case you miss anything.

[Adeno2020 in reply to Moon_maiden]

That’s a thought! Thankyou !

[Moon_maiden in reply to Adeno2020]

Let us know how your appointment goes 🙂

[Adeno2020 in reply to Moon_maiden]

Will update Thankyou!