What treatment?

I was diagnosed with Endo on the 9th April by laparoscopy. It was lazered from my womb and the entrance of my rectum, i also had a patch by a nerve which was causing my right leg pain. Since the lap ive had two periods, im currently on my second period, and the pains are ten times worse than before the lap, the lazering has obviously irritated the nerve Cos my leg pain is so bad and my rectum problem is worse and all other symptoms are still going strong. I told my consultant that i didn't want a follow up appt or treatment cos i wanted to see if i got any pain free months what with it being removed but unfortunately im not pain free.

to be honest with you all in petrified of the treatments that are available and i haven't a clue what i want. I'm the type of person that doesn't just go with what im told to go with. I like to find out full info on the options and get real life experience stories and then i will tell the docs what i want.

please can you lovely ladies tell me what you have had and your experiences of it, thank you x

4 Replies

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  • you must have treatment otherwise it will be twenty time worse... they will help you ease the pain and periodwise... i am on Depo-Provera Injection and it made it better for me unfortunately... as my Endo is mild/moderate as i have it on my womb and bowel and it called pouch of douglas and it is not nice to have it but having period like you said ten times worse... honestly i hate it.. i rather have treatment to make you feel better.. at least i am working mosts people cant... if you dont have treatment it will get it worse...

    so i hope you will get yourself sorted and get a follow up with your consultant ok

    x

  • Hello.

    I had a Laproscopy and hysteroscopy in July last year. I had the mirena coil fitted at the same time (I'd previously had one and it had reduced my endo symptoms so thought it would work again). I suffered terribly following the lap. The pain was much worse post-lap.

    I tried painkillers, anti inflamatories and provera.

    The provera made the pain worse, with constant bleeding and mood swings. I decided I didn't want to carry on and I was willing to try anything.

    I'd read that the endo diet seemed effective for a lot of women, but felt the full diet was too restrictive. I thought I'd try cutting out gluten for 4 weeks to see if that made a difference. And it did!!! After the first week, the pain was reduced to the point that I no longer had to take painkillers or take my hot water bottle to work! I even went to the gym.

    Then I had my first pain free day! It was so liberating after being in constant pain for a very long time.

    I think you need to arrange a follow up appointment and seek the advice of your consultant. I would also consider altering your diet. It's worth a try.

    Take care x

  • Hi Amy :)

    The bit just after diagnosis is always the scariest bit. When I was diagnosed 20 years ago there were just two books on endo available, Google hadn't even been thought about and thank God for that, or I would have been terrified too.

    The thing to remember is that people only generally take to the internet if their experiences have been bad. If things go well, people don't jump on to their keyboards to tell everybody, they just get on with it. I would be willing to bet that there are ten times as many people just getting on with it than having bad experiences. Probably more.

    The other thing to remember is that everybody is different, and so everybody will react to treatments differently. You only have to read around on here to learn that, for example, Zoladex injections have been brilliant for some of us, but some of us have had horrible experiences. I love my Mirena coil, but there are ladies on here who wouldn't recommend it to their worst enemy. And then there are all of the people in the middle. That's the same for every treatment. If there was one thing that worked for everybody, boards like this wouldn't exist.

    I suspect that your nerve pain is still raw after the operation and it just needs time to calm down, but you really do need to see the consultant to discuss it all. Even if they got all of your endo out this time - and that in itself is highly unlikely, there are usually microscopic bits left behind - it will come back. I'm not meaning to scare you by saying this, it's just what endo does. You need to find ways to deal with the symptoms because it will be an ongoing pain in the backside (often quite literally) and your consultant is the best person to advise you on that. It'll probably take a bit of trial and error before you land on the treatment that works best for you but leaving it and seeing what happens isn't going to work, sadly.

    Go back and see your consultant. Not your GP, they know a bit about lots of things, but they aren't endo specialists. I know it's scary, but you have to deal with endo head on

    Good luck and lots of love

    C x

  • Hi Chrissy, thanks for your reply, it was very comforting and you are absolutely right. And thanks fluerbie, i was very interested to read what you said about gluten free diet so i will look into that some more.

    i will give my consultant a ring on Tuesday and book to go for a chat with her. She is very nice and knows what I'm like. When i said i didn't want a follow up appointment she told me she respected my decision and if i ever wanted treatment i just have to give her a call x

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