Help please!

Hello! So I had a lap exactly 2 months ago! It took me more than a month to feel human and I'm 18! So I guess I'm lucky to have had a diagnosis early! But have suffered for 6 years with no answer and constant treatments until this surgery was a possibility.

This endo has caused chronic fatigue and it's been awful. In the surgery, my surgeons were not trained enough. And couldn't operate in some areas. They found endo in my bowels, tubes and ovaries. But couldn't operate in my bowel and tubes, so I still have endo after all I went through. Then at my post op I had some random doc who had no clue!! She barely explained how much endo I had and how severe is was. And then she said I have to wait until I'm in pain again (and next year) to get the rest of endo out.

And I have to go to a different hospital that are actually trained! But it means I have to start all over to get surgery. And I so wanted all this over so I could start the new year fresh. But just these last few days I've noticed a lot of pain again in my bowel and I'm worried that this isn't just surgery healing anymore and its actually the endo. Has anyone experienced this? The doc was so silly and gave my pain meds that haven't worked before and told me to stay on pill and see ya later. But this pain is awful and makes me feel sick and yuck and I'm worried about going out with friends and there's a retreat coming up for some young people too.

Just need some help!

4 Replies

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  • I'm 18 also and have my first lap on Wednesday and dreading this happening to me.

    Best advice I can give is request everything from the hospital even if you have to pay, ultrasound scans or any scans, your histopathology from the laparoscopy and demand a referral to your nearest bsge centre, I know that you feel hopeless and back to square one but they have soeciliased surgeons and gynaecologists at a bsge centre that specialiseninnendometriosis, apparently it's nhs guidelines that if you can't be treated at your local hospital you have to be referred there for a specialist to treat the endo. If you have all your histopathology reports and scan reports then you have something to go with so you're not going back to initial consultations etc. Request all of that and see your GP for a referral or get in touch with them yourself and see how you can get an appointment.

    I'm sure other ladies on here can give you more advise on it as I haven't personally been but have had lots of women tell me about it.

    Sorry I can't be much more help, what pain meds are you on? I have to take cocodamol which doesn't help my pain much and naproxen for lumbar spine pain which I find sometimes helps but not much. I also take mefenamic acid but that's mostly for pelvic pain around time of period and I don't have periods anymore, so stopped taking.

    Maybe try heat patches or packs and hot water bottle to deal with the pain when at home, other than that I'm not sure what's to suggest. I literally have no friends anymore because I'm constantly exhausted and in pain so I know how hard it can be, just take things at your own comfortable pace.

    Hope you're recovering well and get some further help and treatment, best wishes xx

  • Oh wow good luck gorgeous! I went through a general public hospital because it was quick so this probably won't happen to you. That's really helpful thank you! I have to send a form to the hospital but that's no problem, so thank you for that info!

    Such a great idea! You're amazing! I'm on ponston and Naprogesic but they honestly do nothing and some meds make me really sick so i was really hoping that this surgery would help that. I've got heat patches for when I'm out and lots of heat pads but they can be difficult to put on when wounds are bear the site. It's so hard but I'm trying my best to live as normal haha as I can! I feel for you girl!

    Thank you so much, I really hope your lap goes well lovely! Xx

  • For the bowel side of things I've struggled for over 6 years because I was always told by proffesionals it couldn't go into bowel !!! Yeah right I had a lot of pain from my bowel bloating it got to point it made me incontinent is that what u mean by worried bout going out with friends ?? I demanded a bowel consultant in the end and now I'm on peristeen coloplast which has helped with pain and bloating don't get me wrong still get pain but no where near as bad I can't travel far still but I can go out house now best advice is ask to see a bowel specialist Aswel as gynaecologist hope this helps

  • Hi I agree with niomijane, you need to get your records from op then get GP to refer you to a BSGE centre. With regards to the pain talk to GP and explain what you are taking isn't working . Is there something else you could try.

    I have die in bowel wall,(had TAH and BSO in March) that wasn't touched. Before the op I found Mebravine (I think that spelt right) helped a lot with the cramping. It's for Ibs but it stopped the cramps from bowel.

    I know it's frustrating and everything takes so long but if you can see a specialist then at least they will be able to deal with it correctly.

    Good luck.

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