Hi, I'm new here, so let me share my story. This time last year I was diagnosed with a Hydrosalpinx after experiencing really bad pain during ovulation (often a week at a time), accompanied by what can only be described as "flooding" - fluid as thin as water (colourless, odourless) gushing out of me. This would also last for days, which isn't fun, as I go through a few pairs of pants (and panty liners) each day. When it was diagnosed, it was heartbreaking, but I also wasn't surprised.
When I was 20, I had emergency surgery to have my colon removed due to life-threatening Ulcerative Colitis, which left me with a stoma. The following year, I opted in to have the stoma"reversed", meaning they created an internal pouch from my small intestine. With it being such major, invasive surgery, this came with risks, one of them being reduced fertility. At the time I made the tough choice to improve my quality of life.
So now I'm faced with yet another choice. My hydro is so bad (it's big and it's regularly painful) that I have to have it removed, plus it's the only way IVF will have a true chance of working. The usual route would be laparoscopic surgery, BUT due to all my internal scarring, my colorectal surgeon says this is a complete no go, as they won't be able to see and could damage my very working intestinal pouch.
So, my options are - clip it and drain it, but live with the pain; or have full open surgery to remove it, which carries potential risk of disrupting my pouch.
I'm currently on a year long waiting list for the latter (so long as it would be a dual surgery - gynae and colorectal), but I'm constantly questioning it.
Is there anyone here that has/is gone/going through the same? I can't be that unique!
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MrsBobsy
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Hi there! I'm so sorry to hear you are going through a difficult time. I've been there. After 5 or 6 years of trying to get pregnant I was diagnosed with bilateral hydrosalpinx, saw many doctors in 3 different countries. Every one told me something different but there was one who explained it all. So if you don't remove the liquid on your tubs and want to get pregnant...you can have an IVF but the liquid can go to the fetus so it is dangerous as it is toxic..also I was told in the future I can get ovarian cancer. I decided to go for a laparoscopy surgery ( very easy) and they tied my tubs up. I went after that surgery for several IVFs it will be our 11th year of looking for a baby. I've done my last IVF and am waiting for the results! Finger crossed!
Hi Natota, thanks for sharing your story with me, and sorry to hear your journey is taking so long. Glad you managed to get your tubes sorted, and I'll have my fingers crossed for a successful IVF for you! All the best x
Hi MrsBobsy. Well, you've certainly been through the mill, to put it mildly. Just getting to the point, I think that if you have you Fallopian tube drained and clipped, hopefully it would reduce some of the pain you're experiencing, but how do they intend to access it? Diane
Thanks for your response Diane. He talked about going through the uterus for clipping, which compared to the other option seems much less invasive, but he said it wouldn't address the pain..
Now my thoughts are that it should improve the pain a little, as it's so big right now it's pushing into all sorts! But then the other question is, if it's drained and gets rid of the pain, that's great, but will the fluid not come back? I'm not entirely sure how it all works, but surely the fluid will still get produced and have to go somewhere? So if it's totally clipped, where does it go? Does it just refill, and if so, how big can it get before it perforates?
Might seem like a silly train of thought, but I don't quite understand that side of it. Do you have any better understanding of this?
Hi. My thoughts entirely. The fluid is produced b6 the lin8ng of the tube, so all I can see is the hydrosalpinx forming again. I wondered if it could be removed via the vaginal wall, as in egg collection, I don’t know but worth an ask. Would you mind if I spoke to a colleague to see if she has encountered this before? She won’t be around till next week, but could see what she says. Diane
Interesting, I've not thought or heard of that potential. I guess it's worth an ask. My initial thoughts are that it'd be the same reason they don't want to do it laparoscopically - the theory is is that the hydro had formed due to adhesions, so they don't know what it's stuck to, so removing it without a clear view could be risky.
By all means, please do ask your colleague, I'd be interested in anyone's views/opinions. There has to be someone who's had a similar complication!
Hi Kate. After speaking with a colleague about your situation, she too mentioned clipping the tube through the “womb end”. However, she agreed that fluid could continue to collect, and it is hoped that an emergency situation would not occur. I think you are going to have to trust your specialist when dealing with this, who should have sufficient knowledge and access to scanning beforehand. The “clipping” procedure is often used, and usually preferred in sterilisation. He/she will know how precious your pouch is, and may even seek advice from a colorectal surgeon beforehand??? Don’t know what else to say, I’m afraid, but do let me know how it all goes if you can. Diane
Hello, I know you posted this a while ago. I’m in the same boat. Had 9 hr surgery with 6 consultants to remove endometriosis. Have had an ectopic and right tube removal and they’ve now found I have left hydrosalpinx. My endo consultant has said because my organs have been moved around (had bowel removed, ureter removed and bladder moved up and re-implanted to my kidney etc) it would be too risky to do a laparotomy to remove my tube. I’m waiting for a consult with the fertility doctor to discuss next steps but surgery is not an option. What did they suggest for you in the end? Many thanks xx
Most fertility clinics will want the tube removed unfortunately as hydrosalpinx can reduce success rates as well as be toxic in early pregnancy causing implantation failure /early miscarriage
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Anyone had a similar experience - is this ectopic? 
Too few follicles 
12 week scan, Ivf, cancer, hope, never give up! 
Anyone have any experience with this?
