Mentally at rock bottom with diagnosis. Am I being unreasonable?

[ivfscared]

Hi again,

I finally saw my doctor again who has confirmed that I am likely to lose at least one tube due to hydrosalpinx and endometriosis. My surgery is booked for asap to remove tube and the endo.

I literally can't get out of this horrendous mental hole where I just cannot accept my diagnosis and the fact that getting pregnant isn't going to be as straight forward as I once stupidly and naively imagined.

I'm not really sure what I'm wanting to achieve with this post sorry. I just feel so so alone, suicidal and heartbroken that this is happening. ☹️

I had a tube and ovary removed in emergency surgery and was absolutely gutted. I was pregnant two months later and conceived easily three years after that when I wanted a second child. Getting rid of the endo improved my fertility. I hope it does the same for you x

I'm so sorry you've received this diagnosis op. I don't have much practical advice for you. But is there any support groups you could get in touch with?

@OutDamnedSpot

Thank you so much for replying - I haven't met many people who have had tubes removed due to endo!! A lot have had a tube removed due to non related endo problems so this is very positive to hear!

Currently in month 6 of ttc - with the blocked tube - and just feeling so disheartened as I think I'm expecting a miracle ☹️

X

@cushioncovers

I honestly have no idea where I'd look.
Family aren't very supportive at all as they just don't get it. Husband is very good though and has became an overnight gynaecologist/go/counsellor! 😂

Have you had a 2nd opinions? , can you afford private? Could you afford a consultation with dr Peter Barton smith, London. (Around £350)

I have endometriosis and the NHS remove organs way to quickly as they are lacking the highly technical skills and robotic precision equipment that surgeons like Peter have access too, I'm so so sorry about your situation but I really wouldn't trust one drs opinion on something as complex as endometriosis and as serious as your fertility.

@whatnowteenager

I can't afford private easily but we can quite easily save up for it..

I could afford a consultation - does it matter that I don't live in London?

I have had a second opinion from the head gyno in my hospital who does seem confident and good. He's assured me it will be him performing the surgery.

However the one I saw first who is part of the head gynos team seemed very amateur. I am so well educated on endometriosis and I did feel very concerned about the initial gyno.

It's all so confusing because I shouldn't have to explain certain things to the doctors and gyno about endo as they are technically the experts! It's such a taboo subject, for god knows what reason, and it's taken me over 10 years to even get a diagnosis and I'm now worried it's too late and the damage is done X

So I had 2 NHS consultations, 1 with a Bupa surgeon who lied to me about his surgical skills and then found Peter.

I had surgery 2 years ago now and I'm so so grateful to him.

If you have any doubt at all I would say just try him, or there is another one in Surrey who's an excision specialist.

The issue we face is have-a-go surgeons preforming ablation (laser) surgery calling themselves experts.

We are in an amazing position to have access to world leading excision surgeons in the UK but at a price, if you can read up about him and see if he's got space and time for you.

I'm sorry you're also having to fight this awful condition.

@whatnowteenager

Thank you so much - I have been reading about him since you mentioned and he sounds so good.

Luckily, my nhs surgeon (head gyno) has said he will only ever do excision and would never do ablation. This filled me with hope initially but I am still doubting his expertise ☹️ I've read all of his LinkedIn profile too and medical profile to see his qualifications and they are all quite comforting but is this indicative of his skills?!! I feel like I'm being very unfair and stuck up questioning him but I'm absolutely petrified about my fertility. X

If just say any doubt is worth double checking, I was the same seeking out the best surgeons. You sound like you have doubts.

My Bupa surgeon said he'd only do excision but I found out he more often did ablation, or just removed tricky parts he couldnt manage.

My red flag for you is the talk of removal, when that should be the absolute last resort.

I joined MN so I could post on this. I have endo. I had an ectopic 10 years ago and lost one of my fallopian tubes. At the time I was devastated because I thought that with one tube, polycystic ovaries and endo I was doomed on the fertility front. I had a child about a year later and another very easily a few years after that.

I recently tried to get help for my endo on the NHS, which was a total failure. They were not interested at all and told me I was imagining it (seriously). I then saw a private consultant called Denis Tsepov, who removed my endo with robotic surgery. I highly recommend. He was excellent and I felt totally confident in his hands.

Don't despair. It feels awful now but you can still have kids with one tube and endo. Your fertility is much better for 6 months after having it removed. I know it feels hopeless now but honestly, if I can do it with my many fertility issues, anyone can!

@endo123 I wonder if the key is the robotics, the precision they have over other surgeons.

What an amazing story and congratulations. I also joined just to respond the the OP.

Im so sick and tired of the way endometriosis is dealt with by the NHS.

I had endo, very severe, multiple surgery visits. Major surgery resulting in one tube and ovary removed, other one damaged. They put me in a 'fake' menopause, then after a year of rest, I tried to get pregnant, it happened on the first try, then a year later tried again, again it happened straight away. Felt as though both babies were miracles when you think how difficult it can be for some people without endo. However, I just want to give you hope. I had, like you, worried a lot. I thought I would need to adopt or give up on the idea of being a mum. It happened though and both times very quickly. The body is incredible and having hope is very powerful. Stay positive and I wish you all the best. Look after yourself and protect your peace. Keep worry and stress at arms length so you can heal.

@endo123 @whatnowteenager

Thank you so much for joining just to answer me 😭

I too am so disappointed in the complete lack of care, understanding and ultimately research into a condition that ruins countless of lives. I put off getting care for so long as I was lead to believe I simply had bad periods, family and doctors made me feel like I was a complete hypochondriac when I knew something wasn't right.

I'm definitely looking into both of the surgeons you've suggested.

I have never ever heard of robotic excision surgery!! I wonder if that is the way to go...

Thanks again both of you x❤️x

@Overthewine

Thank you, I'm concerned that my other tube isn't in the clear yet until the surgery tells us.

I do agree that I'm being hasty, typically the majority of people I know got pregnant 'without even trying' or on the first time which is so frustrating. It's knowing that I do have an underlying tube problem which is making every month of negative tests hurt more and more which is making me think I'm doomed!
X

@SuperRose15

Thank you ❤️❤️
Your story definitely gives me hope xx

I was worried about my fertility after having an ovary removed but I was able to conceive naturally. I’m sorry you’re going through this but there is hope.

A hydrosalpinx can be a cause of ectopic pregnancy and infertility so in your case it may be beneficial to remove the tube. It shouldn't affect your fertility overall as many others have stated.

I have endo. I had an ectopic 10 years ago and lost one of my fallopian tubes. At the time I was devastated because I thought that with one tube, polycystic ovaries and endo I was doomed on the fertility front. I had a child about a year later and another very easily a few years after that.

My story is similar. My first pregnancy (natural) was ectopic due to endo. I lost that tube. I then had 2 successful pregnancies after having the endo 'burnt away' and with the aid of fertility drugs (the PCOS was the main problem there rather than the endo). I also had a natural conception but miscarried. My fifth and final pregnancy was also ectopic, but that was due to birth complications after baby number 2, not the endo.

I hope everything works out for you OP. :)

@Greenqueen40

My hydrosalpinx tube will definitely be removed x

I’ve been in a similar position and I was told before surgery that I was losing a tube, probably an ovary and that my other ovary would likely not be accessible for IVF.

I lost one tube only and had IVF, where they managed to access both ovaries and we’ve been extremely lucky.

I can relate to what you’re going through so much and I’m always here if you want to message someone about this stuff. It’s so, so hard.

@BackInBits

Thank you so much, I'm so pleased it worked out for you in the end.

I would def love to chat, it's such a lonely place when you are met with all of this! X