Endo pain :(

Hi all :)

I've just signed up to this forum as I feel I need somewhere to talk to women who know what it's like and I don't want to constantly talk to my partner about it and drag him down as it worries him.

I'm currently 23 and was diagnosed with endo when I was 20, since then I have had 3 laparoscopy operations to remove it, 2 of which were in the space of 6 months. At my last operation in August 2014 I had an amazing gynae surgeon who decided to cut the endo away and he did an amazing job and I felt great after, until December when things started getting rough again. I have been back in touch and am waiting to see him again in July.

I constantly feel so drained and lifeless, I never want to go out, I feel like it's dragging my partner down, bless him, but he's so good to me, he's been there through it all, thick and thin and I couldn't of done any of it without him and his support... Especially sitting me on the loo after the operations lol.

I feel like endometriosis is controlling my life and my body and I hate it :(

Please ladies and tips and advice that you can offer would be amazing!!

Love Dani :)

8 Replies

  • Hi Dani I was only diagnosed with endo in Feb of this year and have my lap on 19th June. My husband too has been amazing however I do feel like endo is taking over my live and our sex life. I have currently been bleeding for the last 5 weeks and have been in a lot of pain throughout the tiredness is awful too as I have 2 little girls who are 3 & 4 I feel like I've been really ratty towards them. I am praying after my op the endo doesn't make another appearance u am planning on having the coil? Hopefully this will work for me. I hope yours hasn't come back if it has I hope you get it sorted ASAP. Endometriosis is a awful illness and I wouldn't wish it on my worse enemy x

  • Oh no I'm so sorry to hear that but fab that you're having a lap to sort it! :) I also bleed for long periods of time and feel like I'm ratty towards people, it makes me feel awful afterwards :( I have had 2 coils but unfortunately they didnt work for me, nothing seems to :( unfortunately I can tell that it's come back :(

    It is a truly awful illness that we just have to live with unfortunately :(

    Thanks for replying :) xx

  • Hi the endo excision is the best form of treatment I take it as you had such great success with it last time you will opt for that again?

    I first had endo at 19, layered at 22, I was lucky for it not to come back for a while and I had a baby which delayed it even more, it came back when I was 32 and I had it layered in January and had adenomyosis diagnosed at the same time and a mirena coil fitted at same time. I got worse and 2 months later went back to consultant and started prostap 1 week before my 33rd birthday, I go back in June to discuss my hyster

    The only advice I can give is be proactive, fight for what treatment you want and do your research, you know your body

    Good luck!


  • It was amazing I seemed to heal a lot faster than when I had the lasering previously, and with it being a more aggressive form of treatment that shocked me. I will definitely be opting for it again!! No way would I have lasering again. You had it very young! I suffered for years before I was diagnosed and had anything done about it :( may I ask what adenomyosis is? Also what is prostap I've heard that floating around a bit.

    Thank you! Good luck to you too. Xx

  • Lasered not layered!

  • Adenomyosis is endo in the muscle of the womb, it can't be treated as its inside the womb and muscles, it swells and makes it bleed into itself. It's the most painful thing I've ever had, it's pressing on my bladder and bowel and makes it hard to go to the toilet and when I do it hurts afterwards. It feels like I'm carrying a bowling ball around, I look pregnant most of the time and it hurts to touch, I can't lie on it and I can't have sex. The pressure of it hurts my pelvis groin and legs. I have lower back pain and cramps all the time. I have pain every day all day and night and it's getting worse as time goes on. As the mirena didn't work for me and I was petrified of my periods because the pain was so bad it scared me, the contractions were like labor and I bled all the time with massive blood clots. So I had prostap which is a chemical that turns your ovaries off, it floods your pituitary gland and puts you into menopause. It's given me all the menopause symptoms the worse being hot and cold flushes all the time and waking me all through the night but they're better than the bleeding clots and contractions. As it can't be treated I have to have a hyster but my endo can come back at anytime so will have to keep an eye on it.

    I feel it's totally controlling my life, it's taking away my quality of life and the chance of me having another baby, I'm not ready for it to be so final but I haven't got a say in it - that's what is driving me crazy right now the fact it's out of my control and I can't fix it.

    That's why I say be proactive do as much as you can do, don't leave it to the Drs you know your body better than anyone


  • Oh no that sounds horrific! I really feel for you!

    That is the worst part, the having no control over your body and your life :( I try to be proactive but it's so hard :( I've just bought a book on the endometriosis diet so I'm helping it can help me :) xx

  • Fingers crossed it will Dani, hope all goes well x

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