Advice: Im looking for some advice. So a... - Endometriosis UK

Endometriosis UK
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LAH97
LAH97

Im looking for some advice. So a couple of years ago i started experiencing the first stomach pains, between now and then ive had numerous blood tests and scans and then in august i had a laporoscopy where they diagnosed me with endometriosis. About 20 minutes before my lap they mentioned having the mirena coil fitted during the surgery to try to help with the pain. But this was not a sufficient amount of time for me to decide something like that so i rejected the offer. Instead a week after the lap i was put onto carezette to try to prevent the endo from coming back a couple of months in and i was bleeding pretty much every day and suffering from bad cramps. I then got moved onto noriday but the bleeding and cramps have perisisted, i am also experiencing bad mood swings, feeling depressed and a low libido. I am at the point where i dont even want to take any contraception (not because i am trying to conceive) but because i want to just use natural forms of contraception and go back to normal but im worried that the endo will come back and i dont want to risk any fertility problems.

6 Replies
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Have you had your lap to remove endo? You say you've had the one to diagnose, did they say where the endo was, how much there was and if there's anything else like organs stuck together? You ideally need to know all of that to see what to do next.

Hormones can help kind of hibernate endo but like all hormones not everyone suits them and often it can take months for your body to get used to them. Nothing will reduce or completely stop endo growth as we all (including males) produce oestrogen, as this is what endo requires to grow it will continue to grow.

Endo when in large enough amounts can create it's own oestrogen and so hormones can become ineffective / symptoms are still there, it will continue to grow, it can be a lot less though.

The best course of treatment is a laparoscopy to excise the endo. There's different types of removal of endo; ablation (sanding / air) and laser (diathermy / heat) both where the top layers of endo are removed, both are quicker recovery, less time in theatre, but regrowth is quicker as it leaves the lower endo layers - some women prefer this as they go on hormones to control regrowth. The last type is excision (cutting), this removes the endo and some surrounding healthy tissue, surgery is usually a little longer, recovery can be longer as it's a bit more invasive, but endo regrowth is less.

Some women find hormones work or suit their lifestyle, so it's up to you what you'd like to do.

You need to book yourself in with an endo specialist so they can go through your notes and talk about next steps. A good specialist will want to sort out the problem first so removing the endo then seeing what the remaining symptoms are to sort out next steps.

If you've had your endo removed, then ignore the above! If hormones aren't working for you, you'll need to go back to your specialist to see what to do next.

Hope that helps xx

LAH97
LAH97
in reply to farahziya

Thankyou for the respone.

They werent very helpful after my lap, I came round after having it done and got sent home quickly, i didnt get to see a doctor afterwards i was being told i could go and i had to ask if they found anything, to which she just said yes we found mild to moderate endometriosis which was taking out during surgery and i was too out of it to think about asking anything else and that was it i didnt have any follow ups or anything.

farahziya
farahziya
in reply to LAH97

Oh dear :(

You should have a follow up with the specialist / surgeon two weeks after lap to see how you're doing / go through results although GPs can do this. If you've not had that, then book to see your GP as they may have the results there. Then you should have another appointment with your specialist at 4 to 5 months again to discuss how things are as post operatively you'll have recovered so they can look at remaining symptoms.

You need to know where the endo was, how much there was, whether it was sticking things together, the state of your organs, and what method they used to remove it. This is all usually in a letter they send to your GP. That will help you know what to do next and what happens next.

Unfortunately for some places it's just a case of us learning to be proactive and pushing to find out what went on during our op; surgeons just do the op and expect you'll have followups booked in with a specialist - often that's not the case. You need to check if your surgeon was an endo specialist - on the BSGE list - as some general gynae surgeons have been known to miss some endo especially hard to reach or new growths and may not be skilled in excision thus only offer ablation that will regrow quickly.

Just being honest.

Endo will always come back and the annoying part about that is we don't know how much or how quickly or if hormones do help; everyone's different so what works for one person won't always work for another - it's a case of trial and error. I've had two surgeries, been on hormones prior to that - will not go back on them - if it's any help you could have a read of my experience - look up my profile or search on here for "All this effort does pay off - my story - hope it helps !"

Sorry it's a long post - again xx

Dont worry about the long posts i appreacite any help you can give. Ill look up your story, Thankyou.

LadyPenelope
LadyPenelope
in reply to LAH97

If you’re in London, there’s an Endometriosis Clinic that takes place every 6 weeks in Guys Hospital, McNair Centre. They have some very wonderful doctors and a few I’d love to beat with my walking stick till they stop moving. 😁. I think I probably have the worst case scenario for Endometriosis in the UK. I didn’t get a diagnosis for 20 years and when it was finally discovered at stage 4 during emergency surgery for a raptured ovarian Cyst, I was told by the hospital that they don’t have anyone with the skill set to deal with this thing. Findlay, after 11minths a very bigwig in Gynae and Endo took me under her wing. I’ve lost track of the night umber of surgeries and surgical procedures I had. I’ve lost my rectum and part of my colon. Many Consultants know me by my insides have no clue what my face looks like. Endo is a terrorist.

I genuinely wish you all the best.

LAH97
LAH97
in reply to LadyPenelope

Thankyou for your advice, all the best to you too

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