Given wrong results after surgery!

[toastonjam]

I went for my follow up after my laparoscopy and discovered I was given the wrong results the day after my surgery!!! I'm absolutely heartbroken and need some success stories.

Went in for a laparoscopy for suspected hydrosalpinx removal and excision of endometriosis. After my surgery I was told that both tubes were actually clear and I've had the endo removed.

Then 6 weeks later I find out from the actual surgeon that those results aren't correct. I do actually have a completely blocked tube (not hydrosalpinx though) and my ovaries were stuck to my uterus with adhesions. I don't have endometriosis either.

I'm so upset that I was told incorrectly and I'm panicking so much that I won't naturally get pregnant. My surgeon was optimistic that I would conceive naturally and said he's unsure why the adhesions had formed. He is happy with how my ovaries, healthy tube and uterus are.

Can someone please reassure me?

I'm now panicking I also have pelvic inflammatory disease which is what's caused the tube blockage and adhesions. My STI tests were clear (I've only ever been tested once for STI's which was before my surgery) and I've had a biopsy which was also normal. Would pelvic inflammatory have shown up via laparoscopy, biopsy etc?

My surgeon was happy with my results but I'm terrified I'm not going to be able to naturally get pregnant.

Please can someone calm me down I'm in such a bad state 😭😭

Did your surgeon say that you will be able to conceive naturally?

I'm so sorry you've had such a bad experience. I have endometriosis and had lots of adhesions (to be honest I assumed the adhesions were endometriosis?) my ovaries were attached to my bowel etc.. I had a repeat laparoscopy the year after as my symptoms were back and they removed more endo. My surgeon recommended trying for a baby within the year of surgery back in 2019. But then covid happened, we got married etc..

Anyway, I am now pregnant, after 2 months of trying - it's incredibly early days. But I'm hopeful! I also have PCOS and a pituitary tumour which should also affect my ability to get pregnant. But so far so good. I hope this brings you some comfort 😊

@BirdWatch

Yes he said he feels optimistic but I'm just so worried. I'm hurt that I've been given the incorrect results and I can't understand why I'd have a blocked tube not through endometriosis. X

Bump

@LBF2020

Thank you so much - I don't actually have endo (never thought I'd type that one!) and I thought adhesions meant endo too!! It's so confusing xx

My DSis had PID as an older teen, and salpingitis. She was to,d she would probably never conceive. She went on to have 2 children, then had an ectopic pregnancy so had 1 ovary removed, then had 4 more pregnancies resulting in 3 further babies!

@Soontobe60

Im pleased it worked out for her!

I've not been told I have PID - im just frantically googling why I'd have a blocked tube and adhesions ☹️

Anybody else? X

My consultant told me I had PID after my first laparoscopy possibly linked to an STI, I went absolutely apeshit with my newly exh as it could only have come from him for my consultant to have to apologise after the next one a month later that I had endometriosis.

I think we need to rewind a little, so they suspected you had hydrosalpinx and endometriosis. What symptoms did you have? What have you been prescribed etc for the endo?

Just trying to get an idea of why your ovaries are stuck to your uterus and what they think is causing the blocked tube. I had lots of treatment for endo then the laser lap and dye which is laparoscopy with dye to check tubes are not blocked and a laser to remove endo deposits. Only because my endo is treatment resistant did they see endo deposit when doing the laparoscopy. Most other patients would have had none visible due to treatments before the lap.

Is your consultant an endo specialist? And despite being told I would need IVF to conceive I had two children naturally.

@Sundala

Long story.
Basically I had a cyst removed in my groin (this did include endometriosis apparently but who knows at this stage) and an mri. I found a lump which is why I had an mri. The mri suggested I had a hydrosalpinx and endometriotic lesions in my pouch of Douglas.

Fast forward to my laparoscopy - turns out I don't have hydrosalpinx but I do have a blocked tube. The other tube is normal and healthy. The scan actually showed a small ovarian cyst but this wasn't endo - that's what got confused as hydrosalpinx.

I did have adhesions in my pouch of Douglas and my ovaries were stuck to my uterus with adhesions. These were removed and the histology has shown that this isn't endometriosis - just adhesions. I also had a biopsy to check for endometritis which was normal.

I only went for the first surgery as I'd found a lump. I have had very painful periods in the past but for the past 2/3 years my periods have drastically drastically eased pain wise. So when first told endo it was easy to believe.

My surgeon has mentioned that I could have had endo in the past which has resolved itself but obviously caused the adhesions as when he looked inside there was no endo. He's said this could obviously return in the future. It could have just been superficial endo that has gone over time but obviously caused the damage.

It's all really confusing and I do feel really let down by being told incorrect results the day after my surgery. My surgeon was optimistic that I can get pregnant with one blocked tube and the other normal and he was pleased I have no endometriosis. I did research his qualifications quite extensively beforehand in regards to his experience and he is the top surgeon at the practice. I just feel let down and really confused and fearful that natural pregnancy won't actually be possible.

Sorry for the huge rambling response!

@Nat6999

Omg that's absolutely horrendous. I don't get how this can happen!!!! It's not fair at all x

@toastonjam Hmm well the endo in the cysts means endo when that was forming but there are no endo deposits now in anything they did a biopsy on which in a way is a really good thing. Your surgeon sounds very qualified so I would trust him. If he is confident that you can conceive naturally then you should trust that.

I know this is anecdotal but my Mum had an ovary and tube removed and went on to have 2 more children. After my lap my surgeon told me it was a mess inside, they weren't even sure one of my ovaries could function and I would definitely need IVF and I became pregnant the first month we tried!

I do understand why you are frustrated at being told incorrect information following your surgery but the best thing to come out of this is you don't have endo at present. The positives are there and I think you need to focus on that.

@Sundala

You've explained it a lot clearer than the surgeon has regarding endo deposits - thank you.

He honestly was really optimistic and positive - I sat there crying and he said he's happier than I am! I'm just so scared of having more and more obstacles in the way. So scared of living in constant unknown.

I'm so pleased for you and your mums successes! It really does comfort me.

Thank you xx

I think this comes down to mindset. Focus on the positives, not endo which is the best thing you could wish for. Everything has been unstuck and your surgeon is very hopeful. If you are thinking of ttc then maybe now is the time as the adhesions may cause future problems. Is that a terrifying prospect? ttc now?

In terms of timelines we were told to start ttc as my treatment had finished ie there was nothing else they could do medically so it was just pain meds going forward. But that was the point where he said if you want children now would be a great time to start trying then we can get you on the ivf route in a year. I had taken all the meds you can for endo and so my body was as clear of it as it could be which is possibly why I became pregnant so fast.

@Sundala

I think it's because I've had it in my head that for the last 15 years I've actually had endo so to then find out there's nothing there is really confusing - but if it is endo that's somehow gone then it does make sense. The thought of not having endo was never something that even crossed my mind!

I have been told to ttc for a year now and then go back for ivf in a year later and to see the same surgeon.

I just hope I can get pregnant quickly too - the surgeon said there's no way I'd have got pregnant prior to this surgery because of my ovaries being stuck to my uterus. The eggs were all just dropping down.

Thank you so much for all of your help xx

@toastonjam well that is brilliant, and you did have endo because it was present in that cyst but now it seems to have resolved itself which is bloody fantastic. Your body is endo free but I can totally understand the mindset of being told you don't have it now. Celebrate that even if it all still feels the same.

I wish you success with ttc, it sounds like your surgeon is happy with how he/she left things inside you for the best outcome. I will keep my fingers crossed for you.

Hi guys,

Sorry I know this isn't a brand new thread but I was just wondering if anyone can give experience on having a tube removed? We have been TTC for a while and after getting not great sperm results we went to a private clinic to possibly start IVF.

I had a internal ultrasound which everything seemed normal but right at the end was told there was possible fluid in my left tube. After googling as you do - this seems very dangerous and is toxic to any pregnancy including IVF and realistically would need to be removed...

I am so scared and just feel devastated. I'm in the UK but fear NHS waiting times will be too long to bear. Did anyone have this treatment privately? I am looking online but cant see much in terms of where does it and approx costs.. if anyone has any insight id be so grateful. I assuming maybe 5k+ which is just so worrying especially having to pay for IVF on top of that.

Also wishing luck to all you guys in a similar boat.

Any help much appreciated.
Thank you xx

Hi jadeskade

Just read your post and could have written it! This is exactly where I am right now however have just been to see a private surgeon and got myself booked in for the surgery in May. Wondering how you’ve got on since your post? Sending lots of love, Hannah x

Just wanted to update my post for anyone who might read it - I’ve just had my laparoscopy for a suspected hydrosalpinx, however when they got in there, there was no hydrosalpinx (apparently it was just a completely normal part off ovary that looked odd on the scan)

however….they did find I have severe endometriosis which was a complete surprise! I have had no symptoms of endometriosis (other than sometimes minor discomfort during sex but it was minor so I had written it off as “normal”). My periods are generally quite short, light and painless so the opposite of the classic endo symptoms. I have had a short luteal phase though which is a symptom.

they removed the endo in the laparoscopy so fingers crossed….I will try to remember to update this post for anyone who might read it 😊 xx

@Sundala
Hi
Can I jump in here and ask what meds you took for endometriosis? Thanks!

@Endure100 standard stuff really, I had been on the combined pill for "painful periods" for 10 years, starting reacting badly to that so had to come off it, all endo symptoms came back as no meds controlling it. Saw female GP who didn't fob me off, suggested endo and referred me to gynae.

Gynae started me on Duphaston, which is basically progesterone, sadly I gained weight with it. My endo was still "aggressive" so then they made me go through a chemical menopause in my late 20s. I was on Synarel for 6 months with livial add back HRT. Immediately after that I had a laser lap and dye and there were endo deposits still present. I am in the category of does not completely respond to meds.

Due to my age, 28 and having been married for 3 years it was suggested due to the internal scaring and endo presence that if we wanted children ever then we needed to ttc immediately but that it wouldn't actually happen, I would come back in 6 months and get clomid and then IVF route as there was no way I could get pregnant naturally. Yes, this is me saying I somehow, miracle of miracles became pregnant immediately. That child is now 20, I went on to have another one too.

A really good website if you want to read up is https://www.endometriosis-uk.org/

@Hannah12345678 not trying to tell you where to post but this will get buried in aibu board, best place to post is the women's health board under Health main topic. That endo diagnosis must have come as a massive shock considering how little pain you have. But also good because they found you have it and have treated the deposits.

Great thanks for taking the time to reply appreciate it

Just wanted to update this for anyone who might be searching for the answers in every.single.post like I was!

I had my laparoscopy, period came 2 days later, and I conceived 2 weeks after that! I’m now snuggling my 5 month old 😊 if you’re reading this when ttc - don’t give up hope ❤️ it’s the hardest experience I’ve been through but it has all been worth it! ❤️