Newbie and currently waiting for test's - Endometriosis UK

Endometriosis UK

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Newbie and currently waiting for test's

Delly87 profile image
5 Replies

hello *waves*

I'm 33, my names adele and I have a broken vagina these days..

Long story short, after years of painful/heavy periods, messed up cycles and fertilty issues. Then for the past year constant spotting inbetween cycles and pain during/after sex. Ovulation like pain is now the norm in every day life and oh my gosh, having a bowel movement is the worst pain ever 😫 not to mention the joys of having it made more fun with constipation and bloating...not!

I finally have a scan next week as my gp is thinking it may be endometriosis, still waiting for my gynecology apt as corona stole my original one...booo!

Just wanted to say hello, and ask what they'll be looking for on the scan and if it will show much at all as I've read you need surgery to actually diagnose?

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Delly87 profile image
Delly87
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SunshineSylvan profile image
SunshineSylvan

Hey!

Sorry to hear you’ve been having a crappy time - my situation is similar although I do now have a diagnosis of Stage 3/4 endo. I was having scans almost every few months (due to fertility treatments) and it was only when they decided to remove a cyst last October they diagnosed me with endo. I am one of the lucky(?) ones where the endo is bad but (touch wood) I don’t get regular pain.

I would guess the scan may pick up any cysts or endometriomas but I think a laparoscopy is the only way to fully diagnose endo. I also had a CA125 blood test last year which pushed them to do the surgery.

Hope you get some answers soon!xxx

Delly87 profile image
Delly87 in reply toSunshineSylvan

Thanks for the reply sunshinesylvan 😊

I had my scan today and they said they found a big cyst on 1 ovary so are pushing for my gynecology appointment to be put through faster.

She didn't day much other then its big and that the gynecologist will need to look into what kind of cyst it is and if I'll need surgery or not.

Were your cysts endometriosis related?

Xx

SunshineSylvan profile image
SunshineSylvan in reply toDelly87

That sound similar to me - the one cyst on the ovary (although I now have two 🙄) Yes, my cyst is an endometrioma so is endo related. Did they say what size it was? Mine is 6-7cm which is classed as big. Maybe in the meantime you could ask your GP to refer you for a CA125 test as it can indicate whether your cyst is an endometrioma? I think my level was around 42 which indicates endo.

Hopefully you get seen soon and if you need surgery, I hope you’re not waiting too long. I’m waiting for surgery again now, hope Covid doesn’t hold it back for too long. I only have 18 months until I am no longer entitled to free IVF treatment so feel the clock is ticking! Xx

Delly87 profile image
Delly87 in reply toSunshineSylvan

I really hope you get your surgery soon!! Im lucky my baby making days are over (I went through 4 miscarriages before finally having my daughter and I don't think I could go through that again) so I can only imagine how frustrating things must be with the added pressure of time ticking over your head. What's the surgery for if you don't mind me asking?

I spoke to my GP today, she said its a 6cm blood filled cyst in a pouch near the back of my womb and near my right ovary. She said she feels fairly certain its looking like endometriosis, especially with my other symptoms and there's a good chance I'll need surgery or some sort of procedure to help with the cyst as these usually don't go by themselves...its all new to me so I have no idea what to expect so I'll wait to see what the gynecology person says, if I ever see one...xx

SunshineSylvan profile image
SunshineSylvan

I’m having another laparoscopy to hopefully remove the two cysts and clear out as much of the endo as possible ready for me to then have IVF. My first was at a local hospital but I’m now under a different one where there is a surgeon who knows a lot more about it!

I’ve had two miscarriages and I’m very anxious that il do all this just to miscarry again but I know if I don’t try il regret it.

My cyst was blood filled too and in the ‘pouch or Douglas’ which is at the back of the womb. The name made me laugh! Hope you’re doing ok, I know the waiting is the worst xxx

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