Endo

[ShannonMarie1993]

Hi all,

I'm still trying to figure out how the endo occurred. When I was first brought into hospital and had the first lap the doctor said that my bowel was connected to my stomach and that I had adhesions but he never mentioned endo. Nearly a year later I got diagnosed with endo by a different doctor. I was just wondering is this all connected and is the pain I'm feeling all the one because I get pain down my ovaries where they removed the endo but also in my stomach and side and it always starts near my bellybutton.

[Ollie1390]

Hi!

Yes this was exactly what happened to me, my bowel and stomach were stuck together when they found out I had ending during my first lap. I had a lot of pain in my right side stabbing achey pains and just uncomfortable all the time! When ends spreads it bleeds every month and then turns into adhesions which stick everything together.

If you're starting to feel the pain a year later, see your gp and ask to be seen by an endometriosis specialist who will be able to give you the information you should have had the first time round!

[ShannonMarie1993 in reply to Ollie1390]

Wow so you've had the exact same pain as me. I've been to a specialist but all he is doing is giving me medication and telling me I should go on the bar to stop my periods all together. They don't want to do another lap either. So I'm quite unsure as to what to do.

[applebird in reply to ShannonMarie1993]

Hey Shannon,

Just thinking about what you've said.

As endo generally recurs at some point and can require multiple surgeries - when you're young they can try to minimise surgical intervention as surgery itself leaves scar tissue and can cause adhesions, sometimes making problems worse.

Stopping the periods is another way of dealing with things. I had mine stopped for two years by prostap/pill back to back. The reason was to firstly to alleviate pain, secondly to let some endo growth die back without hormonal stimulation so that excision of same would be easier and thirdly so that when I had my next lap my body would have time to recover without any new endo growth. Your doc may be thinking of another lap further down the line, but stopping the periods is worth a shot to see if it would resolve some symptoms and would probably help you have a better surgical outcome too.

[applebird]

Hi there,

This happened to a friend of mine who had multiple surgeries, up to 7 different surgerons involved. For years she was told pcos and adhesions.

It is possible that you get adhesions due to previous surgery, scar tissue and what not, which was partially her problem. Non-specialist surgeons can miss the endo and attribute scar tissue to other causes. However for years I was telling my friend she must have endo too. Nearly 10 years after her first surgery she finally got a diagnosis and is seeing an endo specialist and involved with an endo nurse etc at a specialist clinic.

For me I was diagnosed straight away however wasn't referred to an endo specialist until after my 2nd surgery. There is a great difference in treatment.

Here is a list of UK endo specialist centres, ask your gp for a referral if there is one near you. x

bsge.org.uk/ec-BSGE-accredi...

[ShannonMarie1993 in reply to applebird]

Thanks a lot for taking the time out to reply to me. I'm at the stage now where I'm getting extremely frustrated with everything! Went out with my family today and I couldn't walk for long because I started to get in pain and then I fell asleep in the car home. This is literally my day to day life.

[applebird in reply to ShannonMarie1993]

I know it is so tough. Here is a link to something that helped me understand my limitations and prioritising what I want to do. Also useful for explaining to family/friends how endo can make you feel.

butyoudontlooksick.com/arti...

Persevere and you will get a treatment that works for you. Endo resolved has helped me think about diet changes etc.

endo-resolved.com/

Hope you feel better soon xx