Follow up confusion!

[lillyflower]

Hi all I've had a stressfull week, firstly worried about what would happen at my follow up appointment on Wednesday as after my lap I was told I had endo on ovary and lession and my tubes were very swollen and blocked so needed removing. So after weeks of trying to except that I needed this next op I prepared for appointment. So I took my hubby for suport and so he could hear exactly what they found.

Firstly I didn't see my gunk but one of his team, he asked if I had results I said yes but as I was groggy when told could he explain. He said both tubes are blocked with fluid and showed we picture of what looked like a round lumpy mass not tube shaped! There is endo behind ovary but biopsy and womb looked ok. I asked about lessions and he looked confused and said well you have endo. He then said so do you want fertility or pain relief? What I wasn't expecting that, I asked about fertility treatment he said he wasn't a fertility specialist but average age limit for IVF on NHS was around 38-39. I had read online Hampshire was 35 so I asked and he just repeated average age and so I should try sooner rather than later. I have read IVF won't be done with hydrosalpinx - fluid in tube so asked and he said well they may be able to suck fluid out! So I said well my main concern right now is pain. So he said do you want surgical or medical? He said that removing tubes may not have any effect on pain and I could try merina which is great and lasts 5 years. So at this point I lost all confidence as I'm 35 that would take me to 40 and he had just said I should think about fertility in next couple of years. I declined so he sugested hormone pill taken back to back for 3 months. I was put on the spot to decide and felt panicked so asked hid opinion to what he would recommend as I thought I needed tubes removed along with endo. He just shrugged his shoulders and said the balls in your court its your decision. I asked hubby and he thought try pill as I run my own business I'm worried about having time off for an op. So he will send prescription to docs for next week.

So this hadn't gone as planned and I began to panic I'd made wrong decission. I started checking online again about IVF and again seemed to say 35 age limit for IVF. I should point out I'm 36 in 2 months so as next appointment is in 4 months I'd be too old. I called my doctor after a sleepless night and yes it is 35 so if we want to try IVF we need to be referred asap. So I am so glad I checked this but now I'm thinking is the pill really a good idea to try? Has anyone found taking pill for 3 months then break helps? I don't suffer heavy periods but irregular bleeding for at least a couple of weeks then a couple of days actual heavy period. It's more the aching and shap pain and leg pains that I need to control. As I've lost confidence that this gyni didn't know what he was talking about, even said could lazer endo if I chose surgery as would get rid of it which I've read is not true! Any advice would be really helpful while I wait to get appointment with my normal doc to see if she's more helpful.

Thanks sorry that's quite an easy!!

[Sheri26]

Hi, think I've posted to you before, I had lap in feb, had cyst removed endo lasered and my tubes are blocked. I already have children and I'm 35 next week. My gp put me on back to back pill so I have a period 4 times a year, this is to control the endo growing I think the less periods you have the better, I do get some pain but not every day. I also take amitriptyline daily which help nervous systems and pain control (its not a anti depressant ). I then saw my consultant wed afternoon and he agreed with what j was taking. And said we will look into medication again in six months.

Hope this helps xx

[lillyflower]

Hi thanks for reply that's good to hear I'm on nortriptyline which is same as amaritaline which doc gave me to help with leg pains which was getting worse. This has been better until last couple of days but still not as bad as before as not limping! Taking pill so reduce periods is exactly what he has sugested to shrink endo. It's hard to know if its the tubes or endo causing most pain! I think I was most annoyed that he sugested age limit was older and if I hadn't looked for myself then I'd have no hope left for kids. I'm glad you have children and this isn't an issue for you. And hopefully the pill may help from what you've said so thanks for confirming x

[Sheri26]

Have they ran dye through the tubes to see how blocked they are ? I do wish you the best of luck, our stories are very similar except the children part xx

[lillyflower]

Hi yes did it same time as lap as hadn't fallen pregnant said it would be good idea so I found out nothing went through theyre completely blocked with hydrosalpinx - fluid in both tubes so have read they need to be removed or capped before IVF as toxic to embryo. I am only small but my tummy is swollen a lot so I think maybe that's why. After op the doctor said tubes need removing so I was so confussed when this gyni didn't think it was important. I have been upset since op as hadn't expected this but was expecting endo to be found. I'm trying to keep positive but its hard to know what to do for the best when the gyni gives no advice and wrong info about IVF. Have they discussed removing tubes with you? I'm hoping my doctor will be able to help me decide what's best to do next. I'm really worried the pill will make me feel depressed, since I've been on nortriptyline I'm feeling happier and coping better so I really don't want to feel so depressed again only just been feeling like me again over last couple of weeks. X

[jojo777]

Hi there, when the tubes have fluid inside and usually they mean that are not only blocked but this is very crucial for pregnancy too, because it is usually ends in ectopic pregnancies that would be very serious for your health and they could have to be terminated of course.

If you want to proceed for IVF the only way is to remove (or unblock if possible) the tubes first (dye tests usually cant unblock tubes with fluid). They wont accept you for IVF otherwise as far as I know and even if they did the success rate is quite low for a healthy, normal pregnancy. I know all these from a friend that she had to remove tubes with fluid and she is currently starting IVF.

I wish you the best of luck, I would suggest you that if you have some money to go straight away private in a good endo gynae and sort everything out without wasting your time.

xxx

[Sheri26]

Don't get low, don't let it beat you !! Be positive !

Maybe you should see if you can get some answers by ringing the gynae department at the hospital and examine your a little upset and confused or people that deal with ivf, they did mention removing everything as and when things get really bad but I'm too young and not necessary at the moment, my children are 13 and 10 so didn't need to discus any further xx

[Juleyanne]

I previously had an ectopic and had to be rushed to hospital where they initially did a D & C woke me to tell me I had an ectopic and put me back under again to remove the tube which was damaged due to endo and adhesions. A while later after pain and symptoms returned I had all sorts of investigations and procedures including blue dye being put through my remaining tube.

It was then discovered the remaining tube was also damaged and I was given the option to have it cleared or removed (I was informed whatever my decision, eventually it would need to be removed). I opted to have it cleared and stayed overnight in a hospital in a bed next to a pregnant woman!! (luckily I am not particularly maternal). The following morning they arrived to take me into theatre for surgery to clear the tube and asked me to sign a form agreeing to this, also telling me to my complete shock, that clearing the damaged tube would only last 6 months before it furred up again, and it could not be cleared twice! So in a nutshell at that point I declined the operation and was hit by a massive surge of emotion realising that was it! Although I wasn't maternal, it still had a huge effect on me as a woman. It was the moment I realised that all choices had been removed. So I feel I need to tell you that should you go for trying to stablize the tube, you have 6 months to get pregnant before it furs up again! Sorry to be blunt but I found this out at the theatre doors after a night in hospital and don't want you to find this out last minute like I did! All the best.

[x_b_x]

Hey

How you feeling?

About the pill helping with pain, to be honest I have now been taking the pill for 3 months none stop and then having a break for over a year now, it helped with the pain at first but now my symptoms are worse than ever, but as you know I think its affected any endo actually been seen on my Lap, I would say give it a go for a while and see if it helps you, but if you are wanting to have a baby then I probably wouldn’t do it. When I come back from my holiday the end of September I am coming of my pill for a while x

[nat_nat_2000]

I am currently on the waiting list to have one of my tubes removed. After my lap my doctor told me both of my tubes were blocked and that the left one was filled with fluid. I was referred for IVF but sadly I cannot get NHS funding as my partner already has a little girl. At the time my doctor said there may be an issue with harvesting my eggs because of the Endo but never said anything about my tubes. However when I went to the IVF clinic they said that harvesting my eggs would not be a problem even though I have a cyst on my ovary, but the fluid in my tube would be an issue and that my chances of it working would be reduced from 60% to 35%. But the IVF consultant was confident that by removing my tube my chances will go back up to 60% the same as everyone else!

I know it's very confusing and frustrating as you would hope that all these doctors would be singing from the same hymn sheet but they are looking at things from very different angles and have different knowledge, understanding and expertise. So it's about gathering all the information and making a decision that is right for you.

[lillyflower]

Thankyou so much for all your thoughts and experiences. I called the doctor surgery and spoke to the on call doctor who said I need to be referred to get on list then discuss tubes etc otherwise I'd be to old for NHS funding. My gyni had mentioned about clearing tubes but I didn't thought is read somewhere it wouldn't last so juleyanne thanks for the info its good to hear some true facts rather than maybe this or maybe that so hearing your experience I would definitely opt for removal. I'm sorry you had such a bad time and weather your maternal or not the thought of that choice being taken away is a much bigger deal than I thought it would be. I always thought is have kids one day but wasn't rushing but with that option quickly disappearing is freaking me out! If I won the lottery it wouldn't be an issue but as many of us have to rely on NHS and knowing in 6 weeks ill be too old to get NHS funding is very scarey. So I now have doctors appointment next Wednesday so hoping she will finally give me some answers as what I should do. One minute I'm fine then I have a panic wondering what life will be like without a child maybe I'd be ok or maybe ill be a complete emotional wreck I'm trying to think positive but after looking at success rates even if I get that far is only 27% so don't want to get my hopes up. On the other hand I have been hobling around for last couple of days struggling to look after my dogs after doing a little gardening I've completely aggravated everything I think so how on earth would I manage with a baby? I know many of you do and I do tend to take pills and just get on so I'm sure I'd cope but this worry does keep popping in my mind.

Anyway thankyou so much for your suport xx