What is hydrosalpinx ?? Help

[Sara08]

Hi there everyone so I had a private ultrasound scan and I was told there's some cystic areas on my left adnexa area.. I was advised a gyni review.. fast forward to yesterday I seen my gyni and she looked at the report and said it does sound like hydrosalpinx.. she didn't look at the images though just read the report from the sonographer who did put possibly hydrosalpinx.. has anyone ever had this and if so what wer your symptoms.. I currently have pelvic .. groin .. back and leg pain.. and its making me feel ill.. just want to know other peoples experiences please.. thanks my lovelies xxxxx

Hi @Sara08

Im going through the exact same thing as you at the moment. I’ve been in and out of the emergency gynae clinic several times, had 2 ultrasounds, antibiotics to treat pelvic inflammatory disease and various pain meds. I’m now 4 weeks in and only just beginning to feel better. They thought the hydrosalpinx was caused by an infection from having a second mirena coil inserted (to treat adenomyosis) but I never had any blood markers for infection and a negative swab was taken. I think with any symptom of pelvic inflammatory disease they will not take the risk so will treat for infection just in case. I am convinced the hydrosalpinx is due to endometriosis. I have not been diagnosed with this (although andenomyosis is related) and I want a laproscopy but they say I don’t meet the criteria at the moment. The hydrosalpinx is not very big… 5mm at the last ultrasound. It did shrink a little in the 2 weeks between my 2 ultrasounds.

The pain has been unbelievable. I too have it around my back, hip and even nerve pain down the thigh. Now after 4 weeks thankfully I’m managing on paracetamol and it’s achy rather than sharp pain.

I have to wait for a repeat ultrasound in May and if the pain is still there I will be put back on the list to see the consultant and I’ll be pushing for a laproscopy.

Im sorry you are going through this. It is hard mentally as well as physically and not helped by the uncertainty of the cause… I absolutely do not think I ever had an infection but I cannot be sure it was caused by endometriosis until I have a laproscopy. I feel like I’ll be begging for it too.

Im so glad you have been referred to a specialist… that is very good news.

Best of luck

Hi @turnaroundtouchtheground

I was given antibiotics in January doxycycilin and some other one for 2 weeks.. she thought it was PID but iv NEVER had a sti ...

The antibiotics didn't work and I had another ultrasound and the hydrosaponx has gone bigger.... I'm seeing the specialist tomorrow I called up and thankfully there was a cancellation....

I strongly believe u have endometriosis as hydrosalpinx alone don't cause any symptoms majority of the time ....

I feel like I keep banging my head on a brick wall as no1 is listening to me...

If I was you I would call gynae and keep saying u have pain and demand further investigation..

When I go tomorrow I want to be put
Forward for surgery and I will not be fobbed off on Any way as the antibiotics didn't work and my tube has gone bigger than thr first scan.......

@Toppppop iv been given the pill but I don't want to take it as I have bad anxiety and I'm scared to try new medication

@turnaroundtouchtheground do u get pain every day? Mine is there CONSTANTLY since end
Of December

@Sara08 i just got to work but I promise I’ll reply later

@turnaroundtouchtheground that's fine my love xxx thanks x

@Sara08
I have chronic intermittent pelvic pain and lower back/sacroiliac joint pain going on for the past couple of years. The pelvic pain has always been right side and the right fallopian is where the hydrosalpinx came. I have a confirmed diagnosis of adenomyosis pelvic organ prolapse and repair surgery, hyper mobility, and been on hrt for 6 years now. In all honesty I think it’s all connected and I want them to look inside BUT in terms of this acute episode of pain and hydrosalpinx… it has been 4 weeks and I’ve gone from A&E level severe abdo pain to managing on only paracetamol plus I know the hydrosalpinx is shrinking. Last week I saw the consultant because they actually admitted me to the ward for serious pain relief. I explained all of the above and they assured me this was the correct path, to repeat ultrasound in May and if the hydrosalpinx has gone but the pain continues I’ll be on the pathway to exploring the pain.

My pain is not constant but just last week it was.

this whole thing messes with your head doesn’t it.. must be doubly hard for you given everything you have been through. Keep a record of your pain etc and write notes before you see the specialist so you don’t forget anything and in case you get upset and your brain turns to mush. That is what I did when I saw the consultant last week. I didn’t get the outcome I wanted (laproscopy) but I did feel heard.

Oh god u really have been through it all... u have all this going on and u still don't meet the criteria ??? I think ur gynae team are jus been lazy if u ask me.... ur In another of pain how do they have a fokin criteria ! Sorry for my language I'm an so annoyed

@Sara08 I feel like I’m on a merry go round actually..I’m just as angry as you! I’m considering trying for a private consultation with the consultant who fitted the mirena back in Jan. I’ve emailed his secretary. It’s a lot of money but I’m scared of just having to put up with this for months on end. And whilst I’m managing ok today I know that tomorrow could be bad again because it seems a bit unpredictable.

let me know how you get on with your specialist 🤞🏻🤞🏻

Yes! I have a good day and think thank god.. comes the next morning I'm back to square 1 with the pain...

I feel like a right addict with the constant pills I'm taking for pain relief....

Hun do u have any discharge with all this sorry if its TMI 😳

@YellowHatt sorry if this is TMI but did u get discharge??? A non odourless discharge? And quite a bit of it?

@Sara08 I didn’t have any discharge no. You’re not alone with this… even though it feels like that!! Keep pushing for what you think you need x

I will keep u all updated today x

Hi guys I had my appointment with the specialist and he was amazing... so after looking at all my history he us 99 percent sure I have endometriosis.. he has referred me for a endometriosis USS he said they check foendo on these scans and there are specialists.... for the mean time i have had the merena coil fitted in and to see if that helps ..... he said surgery after all my history is last resort as I am hemorrhage high risk and I had a uterus repair in 2021.. also a BAD c section and sepsis in 2019..... I have the merena IUD helps me if not I will wait on the scan and then maybe surgery it is..

@Sara08 hi I’m so glad you got some answers and expertise today! That’s amazing news. Mirena is one of the treatments for endo so that’s a good decision! Are you feeling better this evening? How is the pain?

The pain was a good day today anyway .... so will know as the days go on.. apparently its a test and see kind of thing with the coil... I jus want thr pain to stop and he didn't seem to fussed about my hydrosalpinx he said its only 5cm and jus made it sound so normal.. but at least the ball is rolling and I'm not jus fobbed off he's given me a plan of endo scan.. rndo clinic and then if needed surgery..... I also have a MRI for My back come through today its on 10th march... hopefully theat can pick something up endo related...

I realllllllly hope the coil works

@Sara08 did they mention a diagnostic laparoscopy? I understood from the medics I saw that endo may not always be seen by ultrasound. But then again I’ve never been seen by an endo specialist.

Is your lower back pain on the same side as your hydrosalpinx? Mine is, plus hip. I have had pain in that area for such a long time now that I have had chiropractic, osteopath, craniosacral and physiotherapy. Strength training seemed to be helping it a little before the hydrosalpinx.

keep me posted!

@turnaroundtouchtheground yes my pain is more left side and that's where my hydro is.. sometimes I get pain in my hip it's like a burning pain ... amd My back is the worst

about diagnostic all he said was we start off with a endometriosis ultrasound which is more detailed and it takes an hour for the scan but I think that's a start n if nothing shows up there then I think it's more tests etc....

He was also convinced that hydrosalpinx doesn't cause pain so it's definitely endometriosis or adhesions or adenomyosis... he thinks I have all 3 as I have has so much trauma to my uterus n pelvic area...

I just hope My back MRI picks endo or whatever up.. I don't want to have it but I rather have a diagnosis I'm eager to know what it is.....

I would be gutted if it wasn't endo or adhesions whatever coz il be back to square 1

@Sara08 interesting that he thinks the hydro doesn’t cause pain! It’s so hard to know what the hell is going on 🤯

I have private medical insurance with the exclusion of menorrhagia so I’m trying to get consultation and diagnostics covered to at least get to a point of diagnosis now 🤞🏻🤞🏻 I’ve booked a private consultation for 25th March. I’m so glad you posted because it has inspired me to try and move forward rather than wait around in pain as per the current plan!

Yes go forward! Don't sit about in pain ... I'm always on the phone to hospitals and GPS I mean that's what I pay my tax for and i don't feel embarrassed about it at all...

I have private health care but this condition comes under pre existing!!!! So I was really annoyed with that but thr NHS is moving quite quickly

I didn't expect my MRI to be so soon but it's in 2 weeks... keep pushing for answers and definitely ask for a lap!

This thread is always open I will be posting my journey and u can to.. maybe advising one another will keep our mental health at Ease to as mine isn't the best at the moment ......

I love it when I find someone who is going through the same because only they know what ur truly feeling 💯

@Sara08 how have you been?
Up and down here. Overall less severe but still I’m not able to walk around for long 🙄

Hi @turnaroundtouchtheground hope your okay... I'm okay I think the merena coil has bought my pain levels down... I don't know of its psychological or it acc works.... I still have niggles and wiers cramping but it's not as bad as the last 2 months.. when I have a long day me pelvis and back kill all sown my inner thighs Haswell.. went for breakfast yesterday rhrb a big shop at asda was on my feet about 5 hours in total as I took the kids to a soft play and i had real bad pelvic ache.... I personally think walking triggers it and plays a big part ... what triggers urs ????? And I forgot r u on the pill???

@Sara08 i can relate so much to what you are saying. I can’t be on my feet standing or walking more than a few mins without a severe ache that becomes more and more painful. I can’t do the supermarket shop still… and this has been going on over a month. I have 2 mirena coils in and I’m not on the pill but I am on estrogen patches for HRT. I’ve no idea if I’m through the menopause yet but I’m mid 40s.

Every doctor has said they can’t understand the standing/walking trigger 🤯. This is the thing I’m struggling with most!!

im glad that overall your pain has decreased, hopefully it’s a sign that the mirena is a good treatment for you.