I’ve got severe endo and I’ve got my first ever surgery in just over a week and a half (removal of endometrioma cysts unstick kissing ovaries unstick ovary from bowel and removal of all visual endo) I’m very nervous not about the surgery but about the risks involved. I’m also having a dye test to see if my tubes are blocked. This is what I am most frightened of and the risk of having to remove an ovary.
I was trying for a baby for a couple of months last summer but my consultant (he is a BSGE consultant) told me to stop as I have a less then 20% chance with it being the way it is. He put me back on the pill to help with my pelvic pain until surgery as he said I will have a better chance of getting pregnant if I have a “good clear out”. He did say my womb lining looks healthy so I am trying to take that as positive maybe. I finish my last pill and pack the day before my op (coincidence maybe). I haven’t really spoken to my consultant about after the operation yet and have so many questions to ask. I really don’t want to go back on the pill as I want to try as soon as I am able and if everything goes ok with surgery. Can anyone give me any advice on what to except after surgery? Like what happens if my tubes are blocked? Or how long after surgery can I start trying if everything goes ok? How long it takes for your hormones to go back to normal? Any pre pregnant vitamins or supplements I can take after the op.I’m also really worried about having pain during sex after the op even though I don’t have theses symptoms now. Im just nervous about the unexpected. Sorry for the long post any advice will really help.
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Disneynala
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Hi lovely, I'm aboit to start work and would like to reply properly on my break as I have some experience with this but I don't have time to properly reply now. Can you like or respond to this so I can find later. But honestly, I know its scary but I promise you are in good hands with the Bsge teams
Hi, so sorry, I haven't been online in a few days. Bear with me, its long.
I have some similar experiences to you. I had suspected blocked tubes. I had unexplained infertility for a few years. No idea I had endo. Had been on long term contraception due to horrendous periods as an 11 year old and severe pain. Back then my mother and grandma just said it was a family thing and it was to be expected. By 14 I was on the pill because it was unbearable. Literally stayed on some version of it until I was about 27. Then started trying for a baby and all hell broke loose. Severe pain, collapsing. ED trips for the first time in my life. They said I had rupturing cysts and nothing could be done and stop coming. One day I refused to go even though I was in agony. It was actually my appendix rupturing and I nearly died. During that surgery my then OBGYN happened to attend it and he suspected endo. A few months later I was back in having surgery for endo excision and it was the start of my chronic pain. I knew nothing at the time and didn't know he was not trained enough to do such a surgery.i was left with nerve damage and suddenly in daily pain with bladder and bowel and back problems. Couldn't concieve for 2. 5 years after that. At all. Prior to that I had lost some pregnancies. I'm not telling you to scare you, my story has an eventual happy ending. The lesson from that was that you never let a general OBGYN do endo surgery! It needs to be someone with at least a special interest in endo and experience in these surgeries.
I saw a fertility specialist after this who was also specialised in doing endo surgeries. He did my next surgery. After which he suggested going on zoladex to prepare for ivf. To shut everything down for 3 months as there was no obvious reason why I couldn't concieve. I managed to concieve after the zoladex finished but didn't mantain that one either. My tubes were flushed which must have helped.
There's more to my journey but in June last year I had surgery with a bsge surgeon. Again tubes were flushed and extensive excision this time which showed endo was actually in my bladder and deep. The recovery was harder due to the amount they did. I was told I would have highest chance of concieving in the first 3 to 6 months. After 4 months I was devestated I hadn't concieved. But life was much better with less pain and less bladder problems and pain during sex went away (it only appeared after first botched surgery). I made some big changes to diet and took lots of prenatal vitamins and supplements daily for months. Highly recommend agnus castus. Does wonders for you libido. I tracked my ovulation for years on the Ovia tracker which also helped as I started to do it more religiously after that surgery and found my ovulation periods were much shorter than I had realised. I concieved in early November and now 13.5 weeks pregnant with a healthy strong baby.
I think I have answered your questions but please ask me more specific ones if you need. Sorry if some is irrelevant, I'm rambling!
Wow you really have been though an emotional and physical rollercoaster. Congratulations on your pregnancy it’s so lovely to hear. This gives me hope it really does. My only symptoms really are chronic mild to moderate pelvic pain and pain when going to the loo (bowel endo) so hopefully the surgery will help that. I’ve been looking at pre pregnancy vitamins and minerals and getting ready to stock up on them and ovulation tests to start taking after surgery. I will have a look about the agnus castus. Thankyou so much for your advice and story it’s made me feel so much more relaxed and it’s so nice to hear positive stories as a lot of the time you only read what you don’t want to hear xx
That's why I wanted to share. I had given up hope 3 years into my endo journey and like you I only ever seemed to read scary stories. It was rough for me but mostly because I wasn't at all educated about my options and rights for Specialist treatment. I didn't even know what endo was before I had my first surgery. It's honestly never to early to start on the prenatals. Pregnacare do a great one. And your partner can get the male version. I forgot to add that we were also approved for up to 3 rounds of ivf. We had gotten through all the testing and I was about to start the hormones on the Tuesday and found out I was pregnant naturally on the Tuesday. The best advice I can give is to be careful who does your surgery, take your prenatals, reduce sugar and refined carbs, track your cycles. Let yourself recover physically and emotionally after your op. I didn't have sex for 6 weeks this time. Didn't feel ready and I am glad I didn't rush it. Also, it's easy to say but try to have other passions and focus. Obssessig for years about getting and staying pregnant was really traumatic for me. The cliche of "stop trying and it will happen" actually seemed to work for me this time. I had stopped believing it could happen and then it did. Wish there was a way to share how that works but I have no idea. Stress levels reduced perhaps. I wish you all the best. Please do contact me here if I can help again.
Wow ur story is amazing hun !' So happy for you and u conceived naturally aswl that is great, please can you advice me of what parental victim u used and which one are the best one? Also these victims dont affect your endo do they like mske it worse. I have stage 4 endo and I had a lap surgery done for diagnose, they couldn't clear my endo as they said I need a endo specialist for this was told to be on a waiting list so the surgeon who did the op on me said while iam wating I should try for a baby next 6 month as my tube test was fine but I have been trying nothing so far:/. I have a app for ovlation tracking I use tat. Any good advice u can give me pls? Xx
Hiya. Thankyou. I would definitely get an endo specialist to remove endo. I will tell you everything I did when I was trying. Trying not to stress about it was one. I was also trying to do everything I can to get pregnant but also everything to keep my endo away. So I try to have a healthy diet and ate all the fertility foods and went walking every day and also did fertility yoga at home. I ate 2-3 Brazil nuts a day and drank Pom juice as they are classed as fertility super foods. I took pregnacare conception vitamins you don’t have to take pre natal tablets as long as you take folic acid and vit d from what I read. I took Cq10 and Omega 3. I also did caster oil packs every day up until ovulation and tracked ovulation with ovulation tests. Now I’m not sure if any of these actually worked but this is what I tried just to make me feel better and try and keep endo away too. Hope this helps you xx
Hi. I had an endo cyst removal last feb, I was fine after 4 weeks or so. My consultant said my best chance to conceive was up to 6 months following surgery.
If your tubes are blocked they will discuss your options with you at your follow up, but stay positive as these are just ifs and buts at the moment. They might ask you to do ovulation tests to see if you are ovulating.
You can take any preconception vitamins, they do womens and mens and you can buy joint packs too. Look at alcohol, diet and smoking for you and your partner and do what you can there.
You can ask the consultant when is best to start having sex again but I would just go with how you feel.
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Endometriosis, & wanting a baby
Can’t decide 
Contraception
