Stage 4 Endometriosis and Hydrosalpinx

Hello,

Has anyone had experience of both

these? I went to start my first cycle of ivf yesterday to be told in my first scan before starting the stimulation drugs that I now have hydrosalpinx in one of my tubes. I was so upset. They first said id need a tube removed but then said that they would give me antibiotics after the embryo transfer. Does anyone have experience of this and any success ivf stories with this!

7 Replies

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  • Hi there, I had my lap on Thurs and they confirmed I have stage 4 and hydrosalpinx. I'm about to be referred to a specialist. How have you got on since your last post?

  • Hi miguella,

    Sorry to hear this, but best it's been diagnosed. Are you looking to start a family or do you have children already?

    So I found out I had stage 4 Endo and then the hydrosalpix just as I started IVF. We decided removing the tube was too drastic and we went for the antibiotics instead. I took doxycycline the day of my egg collection. I never got a massive amount of embryos and so I had a day 3 transfer with 1 blastocyst frozen. Honestly my case was medically awful! But amazingly I got pregnant on my first round of ivf using doxycycline for 14 days and a 3 day embyo transferred. IVF can work on people with our condition and I'm proof of that! I'm 17 weeks pregnant and baby is healthy based on scans and heartbeat etc.

    I'm lucky and so very very blessed that it happened for us. I thought this would never be me!

    What's your history? Any more info you need just let me know. I want to give others a bit of faith because this journey is hard!

  • Hi miguella,

    Sorry to hear this, but best it's been diagnosed. Are you looking to start a family or do you have children already?

    So I found out I had stage 4 Endo and then the hydrosalpix just as I started IVF. We decided removing the tube was too drastic and we went for the antibiotics instead. I took doxycycline the day of my egg collection. I never got a massive amount of embryos and so I had a day 3 transfer with 1 blastocyst frozen. Honestly my case was medically awful! But amazingly I got pregnant on my first round of ivf using doxycycline for 14 days and a 3 day embyo transferred. IVF can work on people with our condition and I'm proof of that! I'm 17 weeks pregnant and baby is healthy based on scans and heartbeat etc.

    I'm lucky and so very very blessed that it happened for us. I thought this would never be me!

    What's your history? Any more info you need just let me know. I want to give others a bit of faith because this journey is hard!

  • Thanks so much for taking the time to respond and congratulations on your pregnancy!

    We've been TTC for a baby for a couple of years - I'd been on the pill for many years before that. I noticed that when I came off the pill I continued to spot 5-6 days before my period and then cramping and diarrhoea for a couple of days before I came on. And then my periods were very heavy but also short in duration.

    I pushed hard to get seen by a private consultant and he just put me on clomid for 6 months which I then stopped taking because I can ovulate on my own. This same guy blew my tubes 6 months ago and they were clear. But I still felt that something wasn't right and because a scan had shown a small chocolate cyst I pushed to see a endo specialist in London. I had my lap last Thursday and my surgeon was very shocked to see I had stage 4 - stuck to my bowels, bladder, tubes distorted and kissing ovaries. My pain levels don't equate to stage 4.

    My consultant didn't remove any endo as it was so severe and she wants to refer me to a specialist in endo/IVF. She thinks they may have to clip/ remove my tubes as they may be leaking.

    I just feel very shocked by my diagnosis, and gutted that the choice of having a child is being taken away from me through no fault of my own. Really interesting to hear that you took antibiotics as part of the IVF and that you are now pregnant. It's given me hope that not all is lost!

  • Ps just changed my user name from Miguella to SparklyT as I keep forgetting the former!

  • It's so difficult. I was on the pill for 11 years! I had very similar symptoms to you before I knew of all this. Spotting 5/6 days before my period, periods didn't come until 42 days apart most months, I had bowel troubles and awful period pains in day 2 and 3 as well as not very heavy periods. Also very spotty skin on my face. I spent a fortune on clear blue digital ovulation kits, which every single month showed I was ovulating.

    I used to go to the docs to complain about the pain and not getting pregnant and they fobbed me off saying "oh you've started ovulating after coming off the pill". Eventually they did fertility tests at the gp and the progesterone showed everything was fine and my husbands sample was fine too.

    I then got reffered reluctantly by the docs saying oh you're young they won't give you priority but I said well refer me anyway. I got a app at the fertility clinic and they sent me for an ultra sound which had to be done internally and it showed 7 cm cyst and a 5cm cysts on the other side. I was devastated as you will be too. I had an hcg which showed I had healthy tubes.

    I went back to the fertility clinic and they sent me for a lap last August and they abandoned the op as it was so bad inside that they needed an Mri and needed me in the major theatre because it was that Harrendous inside. The Mri showed that on one side the cyst was stuck to my ovary, bowel, pelvis and uterus. The other side was a mobile cyst but it stuck to my ovary. My pouch of Douglas was covered in endo too! But I had a very experienced surgeon and he got it all out in my second lap with keyhole surgery.

    Unfortunetly I didn't get pregnant naturally and the cysts came back within 5 months. I went to start the ivf process where they give you 3 monthly injections of decapeptyl before they egg stimulation drugs. At this point I was unaware of the hydrosalpix and my cysts shrunk to 1.4cm.

    The day I was due to start the egg stimulation drugs (menapur and buserelin) they did an ultra sound and to my horror they found the hydrosalpix. They said more surgery may cause more damage than good so even though removal of the tube or blocking gives the optimum ivf success results for me at this was not really an option. I'm convinced they damaged my tube in the lap as it was fine in the hcg and mri. So we went for the doxycycline option.

    The ivf was such a roller coaster and very traumatic. But the docs thought my chance of getting pregnant was low and look at the result. It's very difficult to stay positive but I would advise that you keep the faith. Our stories are extremely similar and so if it worked for me and others it can for you too.

    You'll still be feeling horrid after your lap too so give your body a chance to recover physically and mentally. Ask lots of questions and if you have a gut feeling then go with it. Ask your docs about antibiotics too and see what they say.

    Try to have the hope and faith as you will get there. It's just a annoyingly long and draining process. Also fertility friends is a great support for people in our situation, lots of people that can help.

    Good luck and I hope everything works for you.

    P.s - I'm 30 and will be 31 soon so don't let age worry you as people get pregnant with ivf at 42. Sorry for the very long message lol x

  • Sorry I've only just seen this post, thank you for taking the time to write such a detailed reply. Since you posted, I've been booked in for another lap on the 18 Dec to remove / clamp the tube affected by hydrosalpinx. And then it will be ivf next year. So feeling a bit better now that I have a plan.

    It's amazing how many women on here have experienced the same thing as me. It's gives me hope that it worked out for you x

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