Scared for surgery

I've been suffering with severe cramps since the age of 15 (now 20) and have been told by my GP and an endo specialist to take the pill to help my symptoms. I'm worried that by avoiding surgery that it will get worse. The pill helps a lot, and I only get mild, occasional symptoms now. I'm also wanting to have a baby in the future, and am worried that I'll have trouble conceiving. I've also adopted a gluten free diet which seems to be helping, though it's difficult to tell if it's making my suspected endo better because of the pill masking my symptoms. I'm guessing I'll have to have surgery to confirm I have endo? (If I don't, I think I'll go mad because of my pain) I'm worried about the surgery! And if I don't do anything and carry on with the pill that it'll get worse. Help please!

9 Replies

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  • Hi you are right the pill will mask the symptoms but it won't cure the endo. Unfortunately the only way to confirm endo is with surgery. It's not as bad as you think. A little sore for a week or two. The worst part is the gas they pump your abdomen with, it can be quite painful, but peppermint tea helps and moving around to dislodge it. I would advise you ask for the surgery , because if it is endo and you have excision surgery it would probably increase your chances of having children. Good luck.

  • Thank you so much for your reply. Just got to build up the courage for the surgery!

  • You'll be fine and remember that afterwards you should feel better so it would be worth it . If you need to talk we are all here .

  • I just had my surgery, almost two weeks ago, awaiting a follow up appointment with my doctor now, and I can tell you this that surgery was a breeze for me! I remember walking in to the operating room, and the next thing i know i was being woken up by this really sweet nurse telling me everything went well and telling me to rest- I was being paranoid because i kept on asking what they found "inside" me :P

    I completely agree with Jean about the gas being the worst bit of it all! i do, still suffer from pelvic pain primarily due to endo they found on my POD, but I wouldn't worry about the surgery!

    Best of luck :)

  • Did you have the endo adhesions lasered? I've always been an anxious person, so having an op sounds like the scariest thing. But I've booked a doctors appointment, and am going to get referred to a specialist and try to persuade them I need this op. It's ridiculous that I don't even have a diagnosis and always have to say I have 'suspected endo'. I've decided I'm definitely going for the op - face my fears and all that! How was your recovery? Thanks for all your support :)

  • I've always been an anxious person myself-dreading exams and getting myself into a complete state (upset stomach, nausea etc) :P So when i finally got the date for my lapro, needless to say, I had a number of sleepless nights..

    Since I had my surgery under general gynae - since I'm not in the UK and i don't have Endo specialists here- I get your hesitation to explaining that you have "suspected endo", because whenever I landed in an A&E because of pelvic pain being soo bad, and this is before my diagnosis (I thought I might have been a hypochondriac, since every hospital brushed it off as regular period or kidney pain) The most ridiculous incident I remember was when a nurse told my mom that i was probably faking it and that i should develop a pain "tolerance" because they thought I was some sort of pain medicine junkie, since i ended up in the hospital every other month :(

    I had my endometriomas/chocolate cysts, on both my ovaries, drained since my surgeon was not an Endo specialist and did not want to risk "destroying any of the follicles." I'm sure, yours will be performed by an endo specialist so they will know exactly what to do and how to tackle that, so you don't need to worry about the follicles thing either.

    My recovery has been a lot smoother, than i had expected. I was sent back home the same day and I took brief walks at home, the very next day. I took a week off uni and even traveled to another city this weekend. I kinda do get exhausted sometimes and try to take it easy-since it's only been 11 days.

    However, since my surgeon found endo on POD and adhesions on my right ovary, I do have pangs of pain and it does hurt when I *ahum* TMI, pee/poop. He also gave me the recording of my surgery which helped me understand the condition "internally" too. I have a follow-up on the 29th of February, and hoping to get a few of my questions answered.

  • Hiya, I was 19 when I had my laparoscopy and I'm now 20 and I'm literally the most squeamish person ever. I was petrified of the operation but I knew I had to do it cause of the pain. I was also told that the earlier it's gotten rid of the less likely it is to return in the future (therefore more chance of having children) so that urged me on.

    After having it, and I'm not just saying this, I'm so glad I did and I wouldn't be scared to have another. It was no where near as bad as the worrying I did before. To me it felt like it was over in a minute and the months after my lap is the best I've ever felt and my pain and symptoms now are not a patch on what they were before because they took all the Endo out.

    My recovery from my laparoscopy was around 4 weeks but I had painkillers and often wasn't in too much pain. You get loads of information from the hospital and I personally looked online for advice and basically you just need to take it steady for a few weeks. My scars have pretty much cleared already they're really faint after only 5 months.

    i know it's easy for me to say it now but I would try not to let it worry you haha you'll feel better for it! I wish you all the best x

  • Thank you, that's really nice to hear that you feel so positive about the laparoscopy - makes me feel like I need it now. I just hate thinking I could be doing something to help my suspected endo instead of just ignoring it. Thank you again for your advice X 😊

  • No worries 😊 Yeh it's the best thing for sure! I had my pain since I was 14/15 as well and it's such a relief to have a proper diagnosis and to be way better than I was so I'm sure you'll feel the same x

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