Going crazy, stage 3/4 and fertility, personal experience

Ive wanted to ask for a while but havent for fear of no response. I have until december, been waiting since June, to have excision surgery, for stage 3, possibly 4. Had a lap in march but not a specialist.

Im going crazy thinking we may not be able to have to children, what are all your ladies experiences with stage 3/4 and fertility after surgical treatment? I am 26, my left ovary attache to my bowel, my right stuck to back of womb and on stomach lining, bladder and adhesions.

Please be honest because everyone sugarcoats it for me out of caring and pity and i know that no 2 women are the same, i would just like to know what to realistically expect xxx keep well xxx

16 Replies

  • I think once you have it put bk to normal and heal your chances of conceiving are increased. I'm 33 and that's what I tell myself with fertility chances.

    sounds like you are on your way as you know what is going on inside already which is a positive step :)

    You need to come here and ask anything as this group of women ok have found to be very helpful and I'm new on here. but they get what we're on about. unlike family/hubby/friends etc .

    what date in Dec is next app?


  • I havent been given the date yet, but I rang to see what was happening and they said December! Thank you for replying , Hope your chances improve also! xx

  • Is it an endometriosis specialist (one of the ones on the list) that is going to be doing the surgery. If not, insist that it is, no-one else should be doing that sort of surgery.

  • How do I see the list? I cant seem to find it sorry!

  • I have stage 4 endometriosis and been trying for around 8 months now. Sadly nothing has happened so I'm going for my 3rd op on Monday. At the moment I'm under a normal gyno who specialises in endo but if this one doesn't get me anywhere then I'm going to demand to be taken to a specialist endo centre. There is some sort of legislation that supports the care of stage 3 & 4 endo, someone linked it into my last post if you would like to check it out.

    Wish you all the best!

    Timothy x

  • Thank you so much, I shall have a look now! Good luck for Monday, hope it goes well and good luck TTC! Xx

  • You have time on your side, but you must get the right treatment. You need the right Dr and they need to get it all. It is possible you have it in your POD (pouch of douglas). I've read a lot about this and some ladies get lucky after radical excision and fall pregnant naturally. If your plans can allow I would say try as soon as you can. At your age your eggs will be healthy and if it doesn't happy naturally then your IVF chances will be much higher because of egg quality.

    I know what it feels like. Unfortunately I wasn't diagnosed until very late, despite going to the GP numerous times in my early 20s and actually saying to them aged 24 that I thought it was endo. I wasn't diagnosed until a massive cyst developed some years later.

    You say 'we' so it sounds like you are happy and stable in your relationship. You can build a career, buy a house later in life, you can't always have children.

    All the luck in the world xx

  • Thank you for your kind words, we were planning our wedding but are now postponing and plannning for a baby because we'd be devastated if we waited and it was too late. Thank you again, I hope everything works out for you also xx

  • I was diagnosed at 18 with stage 4 endo and told I was such a mess inside I would probably never have children. I had my first daughter aged 28 & my 2nd aged 32. I conceived naturally both time after having surgery to remove endo & cysts & unstick everything. I am now 43 & going to have a hysterectomy & tpe in December. It will be my 9th & hopefully final surgery. I just want you to know if someone with stage 4 & such a mess (by the time I conceived my 2nd child only 1 ovary was working) can conceive there is always hope.xxx

  • Thank you so much for your reply, That does give me hope! I wish you all the luck for your upcoming surgeries! Xxx

  • Thanks, all the luck to you too. Also when I fell for my 2nd daughter we'd been trying for a few years & decided to try IVF, I had my first appointment in September & fell pregnant naturally in August. When I called to cancel the appointment they told me that happens a lot because people don't have the pressure of trying anymore they relax & then conceive. My gynae kept telling me to try not to be so anxious but I found it impossible. It was the only thing I could think about! So anyway sometimes a total distraction helps, we went away for the weekend and weren't "trying" xx

  • I wasn't diagnosed until I was 31 when I had my lap. I was told at my follow up appointment that we wouldn't know until we tried but our best chances were the first 6 months following surgery. As we were planning on getting married the following year, I chose to go on hormone treatment after the operation for 6 months to stop my periods and give us a little time. The majority of my endo was found in my pouch of douglas and obviously each case is different, I believe fertility can depend on where the endo is found as well as both partners general health and well being.

    I came off the treatment in June 2014 and was naturally pregnant by November '14 but sadly we had a missed miscarriage at 12 weeks in February (not linked to endo-just one of those things). I am happy to say though, that at the age of 33 and with stage 4, I am currently 29 weeks pregnant. I hope this can offer you a little reassurance but also understand the stress and frustration of not knowing. No-one can really give you a definitive answer unfortunately. Good luck with your op-I hope all goes well, there are lots of people on here you can talk to if you have any further concerns. xx

  • Thank you so much for your reply, it does help a lot. Many congratulations to you both, so pleased to hear that! Thank you again xx

  • Never give up hope. You have time on your side as you are only 26. I have endo and a few other medical conditions and was very blessed to fall pregnant naturally just prior to when I was due to have TPPE surgery. I now have a wonderful baby daughter and count my lucky stars every day. All the best :-)

  • I had one of my ovaries tied down with an endometrioma which caused it to adhere to the wall. Doctor said I have good prospects for having children since my tubes were patent.

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