Anybody with or had hydrosalpinx please share your story with me , feel lost

After a few years of no contraception with my long term boyfriend realised something was up, after having cancer cells cin 3 removed twice thought could be related and decided to talk to doc she said she agreed we should look into it, after sending me for a hsg, I'm a scaredy cat at stuff, got very teary and grit my teeth wasn't very nice but wanted to know what was wrong, she didn't say much just that the dye never got through an being in a teary state didn't ask, after a month of waiting for my doc to get results which they lost an asked me to have another which I refused they turned up an my lovely doc said that it was hydrosalpinx on one tube an that she would refer me to see what can be done ect, next step was millions of blood tests for referrals for different things and my boyfriend to have siemen test for me to get refered, while waiting on this had a ultrasound unrelated to this for my kidney stones which had me in severe pain, on scanning me they scanned my pelvic just as part of the kidney stuff and nothing was said just I had loads of stones, on going back to my doc to see about the kidney stones referral ,she said that they by chance noticed I had a cyst on my ovarie, was a bit bummed thinking something else that may cause problems, so they wanted another scan in 6weeks on the scan, which was Friday just gone, this time had lovely staff which talked me through it all, but could not get a clear view as I was meant to have drunk a ton of water which I wasn't told or had to do before,,,soo they then said I needed an internal vagina scan, after 15mins(felt ages) one done it an was confused so then the other lady had a go ,both confused they got a Gyno to take a look who said it was not a cyst but that I had hydrosalpinx on both tubes which left me feeling nervous to be honest, finally my boyfriend just had his siemen sample at the hospital today ,who mentioned the waiting list is quite long, soo now when his results are back to the docs we can be refered as a couple to see what can be done I suppose, been reading a lot on here as I am going to be waiting a while to get my appointment, a lot of people had both removed ,medical sites saying they will only repair if it is small and one tube, then some girls saying they had repaired, would love to hear if any of you had it and how it was resolved, by repair or removal and did you have ivf was successfull . Feeling lost as my hubby keeps saying will just be fixed it's nothing major stop stressing . I'm guessing either way will need some kind of operation for repair/removal?? Will it be painfull?? Will it work ,all kinds, any similar experiences would love you to share x

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  • Hi Milly,

    I am sorry to hear you are having such a bad time. I too was diagnosed with both tubes having hydrosalpinges after we had been struggling to conceive for 8 years. I was given the option of either having them clipped or removed. But i was told that if you have them clipped they can still cause pelvic pain, therefore it was better to get them removed. I had that done along with major surgical excision of my endometriosis at the same time. For people who just have their tubes removed it is a simple procedure which they do via key hole surgery from which you should recover in 2 weeks. We had one failed IVF before the operation, then another failed IVF after the operation, and now following a third attempt I am 31 weeks pregnant.

    During my first attempt the consultant who put the embryos back in was very cross that my Doctor had not done anything about the hydrosalpinges as if you have this it reduces the chance of IVF working dramatically. So i think without having them treated IVF could be a waste of time, due to poor implantation rates.

    I hope this helps and I wish you all the best with your journey.

    Miwa xx

  • hi miwa

    thanks for your reply and congratulations

    still waiting on appointment with clinic seem to have long waiting lists so haven't discussed it in detail with anybody yet to see the options

    i have suspicions i could have endrometriosis get a lot of pain that i think is my ovaries and bloating and stuff thought i would mention it when i eventually get to see somebody, did you get any symptoms from the endrometrisis ?

    and thank you for sharing your story

    ive read a few story's saying its better to have the tubes removed an wanted to read that was the right option incase that's what they ask me

    big thankyou again

    and congratulations

    milly :) xxx

  • I did have a lot of symptoms from my endo prior to my operation - pain prior to and during my period, painful intercourse, fatigue, difficulty walking due to pain during my period, pain on emptying my bowel, unable to empty my bladder fully etc. All this has now gone since my operation. If you ended up having an operation to remove or clip your tubes they could assess to see if you have any endometriosis there and then. They may suggest doing a diagnostic operation first, to have a look and see what is there, and then a further operation to treat what ever they found and what you agree too. I would definitely mention all your symptoms to them.

    I hope you get your appointment soon.

    Miwa

    xxx

  • Hello miwa

    Thanks for your reply again , has been very helpfull talking to you, from your symptoms I can relate to most of them so feel a bit prepared for them to say I could have endometriosis as I have these symptoms, my appointment is on 20th of this month ,thanks again

    Laura xxx

  • This all seems far more complicated than my story: I was referred to fertility clinic, had blood tests, routine ultrasound then routine HSG, dye not getting through so immediately booked in for a laparoscopy. Had lap, diagnosed with scarred tubes and endo, immediately booked in for full laparotomy to repair. Six month wait and then op. 6 months of trying naturally after that and I am now due to start IVF protocol next week.

    I think you need to get back to the fertility clinic and ask for a diagnostic lap, and to understand what the next steps are. Even though you are squeamish about asking, it keeps you in control and the process as smooth as it can be.

  • Where are you from,was this all done quite quickly? ,it's so spread out and considering it was first ever raised with my doctor over a year ago now, had more blood tests this year than from all the blood tests in my life, had the hsg ,had ultrasound,then returned weeks later to have internal ultrasound, had a ct scan then a different type of ct scan , the tests have been ridiculous amounts and haven't even seen the women's yet, we'll my appointment there is in 3 days which is so exciting to get to this stage as I was sent my appointment 3/4months ago ,my partner had his siemen test,so this will definitely be us getting to talk to someone, I'm guessing I will have a lap ,just so long winded ,probably being selfisn moaning but just want to see what they say I expected to get to talk to someone well before now and then all the long waiting on getting a lap an so on,just want to know where I'm at :( ,,have you started your ivf... I wish you good luck and thanks for commenting, let me know how you get on please

  • Hi, this was all done in Plymouth. There has been a lot of waiting but not as much as you it seems:

    Saw GP - February 2012

    First appointment at fertility clinic - July 2012

    Ultrasound + HSG at fertility clinic - August 2012

    Laparoscopy - November 2012

    Laparotomy (tube repair) surgery - May 2013

    Starting IVF - February 2014 - wish me luck!!!

  • Oh right must have a quicker system down there, I'm Birmingham just seems longer at getting appointments but my first fertility appointment is tomorrow at last :) ,I've already had all the ultrasounds and hsg and stuff done hopefully won't need them all again :/ hopefully , so you start your ivf this month , good luck i hope you get results and let me know how it all goes, good luck :) x

  • Hi maccerpops

    Just noticed how come you had a laparoscopy in November and then a repair in May, how come they didn't do it on your laparoscopy, I had my first appointment in fertility at the hospital yesterday and she said I can have my laparoscopy done next month and when she looks she will make the assessment and either remove my tubes,clip them or fix them depending on what she thinks is needed, she's give me all the prices and information on the ivf ,so my ball is rolling now x

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