Endometriosis UK

Recently diagnosed and confused

Hi my name is Sarah and a week ago I was diagnosed . I got rushed into hospital in November with severe abdominal pain and was told I had a large simple cyst and P.I.D and the cyst would need to be drained they sent me home with painkillers and 3 lots of antibiotics as I had a severe infection after being in hospital for 4 days. After 2 more scans and an MRI I have been told I have endometriosis . I have 2 large cysts and my left fallopian tube is swollen I'm having it removed along with my ovary and cysts. I have chosen to try to save 1 of my ovaries for now and wait to see what they find on my bowel . I'm so confused about the benefits of having a full hysterectomy and the side effects of hrt and also wanted to have a good moan. I'm always in pain n feel like sometimes my family n friends think I'm lazy and exaggerating. What's do the stages mean and will the op help?

2 Replies

Cysts if they are found to be endometriomas are stage 3 or 4, regardless of how much other endo you have.

A swollen tube is often called hydrosalpinx and is usually whipped out too.

I had the left lot taken out and now have the right ovary in and best of all a mirena coil was also put in at the op (which by far is the best way to get it put in) - which stopped my periods after 5 months and has given me back my life.

The NHS have guidelines to save at least one ovry if possible to avoid the need for HRT.

One ovary is quite enough to protect bone density and heart health, both of which are much more at risk if both ovries are taken out. With the best will in the world HRT can only do so much - it is a good substitute for missing ovarian function but not as good as the real ovary.

A hysterectomy does nothing for endo. It isn't cure. The only hope is to have the uterus removed at the same time as ALL the endo is removed where ever it may be.

That is quite a tall order for anyone stage 3 or 4 endo. Nigh on impossible for most surgeons.

Have the lap op to get the cysts out and let the surgeon see what the state of affairs is regarding endo.

You may not hve much else - or you could aalready have it on bowel and bladder and perhps need more specialist surgeons on the case at subsequent surgery.

Because it can grow anywhere - and we are all different - it might be a better idea to opt to have either mirena coil put in the easy way in the op, and see if tht works to stop your period hell each month, or after the op use BC pills bck to bck to reduce the number of periods in a year.

arranging specialists to be available at the same time for a surgery can take quite some time, so considering now the steps you want to tke to stop hving periods is a good idea. Just having the uterus out will stop periods it won't stop endo.

If you are having a general gynae do the op on the cysts and locating where the endo is, nd endo is found to be in tricky places then ask to be refered to one of the accredited endo centres for the next op.

The list is on



Thanks for the reply kind of confirmed my decision to keep one ovary. My doctor did say if anything was found on my bowel I would need a specialist surgeon for that. I had the Miranda coil fitted a few months ago so I think I will be sticking with that. Had awful pain these last few days feels like its in my pelvis and hip bones is this normal? Even with my cocodamol

and t.e.n.s machine its preety bad doctor says if it doesn't ease off soon I ma6 need something m9rphine based.


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