Has anyone had 4 years of pelvic pain with Hydrosalpinx (tubes blocked with fluid) and what are the options please? help

Hi

I'm due to see the consultant on thursday and hopefully soon a lap to treat this hydrosalpinx. I had a diagnostic lap 2 years ago but they said it was normal apart from a small cyst. looking back i wished i had pushed for more help & info but the gp said my pain was ibs.. grr.

anyway, now i finally have a diagnosis as after i had been trying to get pregnant for 7 months i told the gp i have lots of pain still (and no pregnancy). I have regular but short periods.

I got sent for a pelvic scan last week .internal was extremely painful and i thought i will put up with this as i may get some answers finally.

I was told i have a cyst on the right tube and fluid in the left tube. Later on the pain got severe and i couldn't sleep I had palpitations, nausea etc. i went to a & e. they gave me gas & air, then codeine.

Now i have a referall to see a consultant on thursday but i am confused and upset as they have sent me a letter asking me to have another internal pelvic scan. They have not said why and it was only a week ago i had the last one. I'm very worried this will be extremely painful . I will try to contact the hospital doctor on monday to ask about this.

Personally i really want the left tube removed as soon as possible as i feel like its making me constantly ill as if i were fighting an infection.

Just wondering does anyone have any similar experience of this and what choices were they given, what treatment is available? I had anti-biotics in the past but i don't think thats an option now.

I am aware that ivf can still be done if tubes are removed. The trouble is there seems to be little information out there about this condition. If there is anyone out there with info and in the same boat, please contact me! much apreciation , thanks! x

10 Replies

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  • hi there

    yes i have had this and tubes/ovary to each side removed at diffrent times now i am no better pain wise, never been pregnant, too old now lol... i do struggle daily and i am not being negative its just pain is an issue and i take strong pain relief. reason i am in this position is that adhesions have tethered down my other organs and it is too difficult to separate and even if that was done the adhesions would just regrow. what i try to do is keep supple, eat blandish food, no fizzys, no longer can stomach wine etc!!! lol.. feel really low sometimes, i have always supported myself up until five months ago and i left work, have not tried to claim any benefits as i no it will be near impossible as i *look* ok...and was told (CA) if i can walk and talk theres no point in trying to claim - so i am really stuck.

    i have had, surgery, zolodex inj, coil, dye injections to tubes, adntidpressants, many diff pain tabs to try, botox into levi musc. physio, use at times peristeen system as bowels are a problem, all the other emotional stuff.

  • Be wary about having both tubes removed/operated on , tubal surgery needs great expertise. Where do you live ? it's better to rescue what you've got !

  • Hi,

    thanks for the replies. :-)

    I have been in touch with infertility network who have put me in touch with a nurse. The last (at least 4 years) were so frustrating as before i thought i was mad because nobody seemed to believe me, and now it seems the condition is much worse than before. . trying to stay positive however.

    I'm in west midlands area

    guess i'm just nervous about this week and how it will all pan out. .

    I'll make a list of questions to ask my gynae consultant. I'm scared to get both tubes out but totally convinced I want the left one gone . . if it was drained I sure the scars or adhesions would be still be there and then i would be scared that i'd get an ectopic pregnancy.

    now off to phone the hospital and ask why i need to have that second dreaded scan.

    thanks again for reading , i have found the support networks very helpful in general.

    phew. x

    xx

  • There's someone in Nottingham if that's possible. I conceived with just one tube/ovary. I'd get as much info as you can about the state of the tube on each side and If you're going to have surgery I'd even mark the side to be operated on beforehand !

    Good luck

  • Hi, I've been in a similar postion i've had pelvic pain for 7 years. It was always blamed on me having arthritis in the neck (was diagnosed 13 years ago, i've now been told i haven't got it !!) I've since been to a new g.p, who did x-rays, physio and pelvic internal scan, where i was told i had 1 tube blocked, i went to hosp and was told i would need laprascopy and have tube removed, ended up ringing hosp as my pain got worst and my depression was even more worst (tablets were actually doubled ) caused by me not sleeping - I can never find postion with no pain, i got a cancellation straight away i thought great, had laprscopy and behold my tube had cleared, but i had adehsions on my stomach wall and Varicoes Veins in my stomch (can not for life of me remember what they proper term is). Went back to surgeon and am now waiting to see Dr Watson, who specialises in Chronic Pelvic Pain. I find this very funny as i have a 2 year old son, and when i was pregnant i was under Dr Watson and had that much pain he admitted me and said i had PND, even though i kep telling him i have had the pain for 5 years before i think this will be intresting.

    What medications have you been on ? Even though my tube is clear i still have the same pain infact sometimes it seems worst, so i would think very carefull about having it removed, maybe they want another scan to see if the hydro (what ever) has changed, i've been told there is no way of telling how long my tube was blocked (i was curious as i caught with my son within first month of trying (on honeymoon infact) . Let me know how you go on, (i'm at hospital next week to see Dr Watson !!!

  • Hi,

    sorry for the delay, i'm just exhausted at this week . . Judy, thank for your post, I've now got a huge list of questions for the doctors!

    I'm so stupid , sorry ! i got the date mixed up, thankfully i don't have the ultrasound until next march, not this week like i thought (i blame the concentration issues on my meds! ;-)

    at the moment, i'm just taking co-codamol 6 tabs a day, and on citalapram for depression.

    In the past i tryed tramadol but couldn't stand it - it made my migraine worse and felt totally out of it.

    I also tryed amytriptaline and that worked well, except combined with co-codamol i was sleeping a ridiculous amount and felt drowsy all the time.

    Beks, thanks for your post, I'm sorry you're having such a bad time, I had not heard of this varicose veins on the stomach before. :-( Have u had an endoscopy to see inside your stomach?

    whereabouts do you live? Good luck with seeing your Doctor Watson!

    X

  • Hi Tortiseshell, Seems we're both having concentration probs i'm not seeing Dr Watson till 14th March haha, I know i was shocked when i got told i had varicose veins in stomach (pelvic congestion syndrome- it bugged me i couldn't remember the name so looked it up last night) i thought you only got them in your legs, but funny enough i caught end of embarrasing bodies last night and there was a section on it ( i missed most of info) !!!. So you've been on the same meds as me, i can't take anything with codeine in but was surprisingly given cocodamol it by old gp, same prob with tramadol. Amytriptaline didn't touch my pain or sleep but i ended up weeing every 2 hrs (not great when you can't sleep anyway :-) ) I actually slept last night, which was haven !!!. I'm citalapram too have been on it for years - i think depression is same as Chronic Pelvic Pain or whatever is wrong with us - no one can see anything wrong and sometimes i think people think i'm making it up. I haven't had endoscopy, just laprascopy funny enough my hubby had endoscopy a few wks ago. I just live outside of Manchester, are you still going to see consultant on Thursday ?, i know it sounds daft but do your shopping list mentally or sing a sond in your head while having your scan might help you relax. I know this very personal but does it hurt when you have sex ? Good luck in everything and keep me updates, keep smiling (i know its hard at times, if your like me i put a front on when people are about) but try and stay positive, again hard i know) xx

  • Hello0,

    I"ve tried to get an IUD twice and both times my body rejected it. Finally, they sent me to get a pelvic uc and in the note it says that I could have Hydrosalpinx. I'm kind of freaked out and don't know what to do. I've never been pregnant before, should I freak out? :(

  • As a positive story - I have a friend who after having her tubes removed managed shockingly to get pregnant naturally.......

    It may not be the case for you, but just wanted to say miracles can happen. Xxx

  • Hello

    I just recently found out that my left tube is a hydrosalpinx, but its open at the end. I am in the process of trying to get pregnant. I had an HSG and apparently all the fluid went out of my left side, but they aren't sure about my right because nothing happened. I was told that if I got pregnant that I have a high chance of having an ectopic pregnancy. Im concerned because I already have endometriosis, im lesbian so purchasing sperm isn't cheap. I want to know if anyone knows how much of a chance I have on getting pregnant and how much of a chance do I have on it not being ectopic and that I can carry to term. Im really scared and worried

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