Endometriosis : I am on a waiting list for... - Endometriosis UK

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Endometriosis

Zoe1986 profile image
Zoe1986

I am on a waiting list for surgery. I'm afraid that the damage is already done and that I won't be able to have children...

Any thoughts on this?

28 Replies

Hi Zoe, I think I know what you mean, worrying about the outcome. I worry quite a bit myself. 😉

It's good that you'll have the surgery to help you feel more comfortable. Things will get better from here.

And as for fertility after surgery, I've read that it usually improves.

It's ok to worry or to feel down, and when the time is right, and you start to feel better after surgery you can take stock anew.

Sending you good thoughts!

🌿🌼🌿

Zoe1986 profile image
Zoe1986 in reply to June_Viola

Thank you so much, June! X

Hi there, I understand your worries, it must be a scary time.

Just to share a positive story, I was struggling to conceive in 2009/2010 and had a diagnostic lap which identified endo, a cyst and a blocked tube - I remember the surgeon saying that any one of these could be the problem and I needed to see a specialist. I was referred to a fertility specialist who in 2011 excised the endo, freed my uterus (it was stuck I think to my bowel?) and found that I had a septum (basically a wall) down the middle of my uterus (rather than a blocked tube). Amazingly I fell pregnant 6 weeks after the second op which I am forever grateful for.

Is this your first surgery? Have you been advised how long the waiting list is? Really hope you don’t have to wait too long. Happy to chat by DM if it would be helpful xx

Zoe1986 profile image
Zoe1986 in reply to Pacman12

Thank you for sharing your experience!I have two large dermoid cysts on both ovaries. I've been waiting for surgery for over a year. Still no confirmation of when...

I have been trying to conceive for 7 years... this is why I am so worried!

I have this feeling that my tubes are blocked. But I won't know until I have the surgery, I suppose. XxX

Zoe1986 profile image
Zoe1986 in reply to Zoe1986

Yes, this is my first surgery.

Pacman12 profile image
Pacman12 in reply to Zoe1986

Crumbs, that is a long time! But being on the waiting list is good, it’s a positive step. I’m guessing you’ve chased them up but can’t get any clarity on the waiting list times?

A couple of things it might be worth me sharing - when I had my first surgery they had not had me consent to a hysteroscopy (a camera inside the uterus) which is how they didn’t see the septum and thought it was a blocked tube as when they did the dye test it was only going into one side of the uterus. With the benefit of hindsight this was a bit daft as it could have missed other things too e.g. fibroids. Also, I had assumed that they would treat anything they found in my first surgery - so it was a big shock to be told that I had 3 things wrong but had to go see someone else. So my advice ahead of the surgery would be to be clear about what exactly they are looking for, what procedures they are doing (and not doing) and what they will do if they find anything.

Secondly, my initial surgery was under NHS, I did have private healthcare cover through work but assumed that as my issues were fertility related that it would not be covered. However, in a bit of desperation after the diagnosis of endo I contacted the private healthcare company and they said that as the pain was impacting my quality of life that they would cover one operation only to have it excised. So the referral to the fertility specialist and subsequent op ended up being done privately and therefore much more quickly. I only mention this in case you have got work cover and had made the same assumption that I had.

I really hope you don’t have to wait too much longer. When I re-read my factual story above it does not illustrate the feelings I had when I was waiting for answers. It’s easy to say and not easy to do but try not to let your mind run away. Keep chasing your consultants secretary. Sending positive thoughts your way 😊 xx

Zoe1986 profile image
Zoe1986 in reply to Pacman12

You have really made me feel at ease and thank you for informing me of your experience.

I'll be sure to ask questions about the operation etc.

xXx ❤️

I haven’t had this concern as way past this line, but having had two ops last year including hysterectomy do make sure any questions you have are answered and you know exactly who is doing the surgery and taking fertility into account and in writing. I’d been waiting for them to have an MDT meeting most of last year, that’s what I kept being told only to have the op with out the consultant telling me there had been no meeting and he hadn’t spoken to any colorectal surgeon.

I hope that you don’t have too long a wait.

Zoe1986 profile image
Zoe1986 in reply to Moon_maiden

Was a hysterectomy the only option for you?

I realised after a few years that something was wrong... but only pushed for an investigation over a year ago. I was told by doctors not to over think it and to stop worrying... I was strong for an investigation in the end :/ Thank you!!

Moon_maiden profile image
Moon_maiden in reply to Zoe1986

They do frustrate me at times, it’s down to them we think about it in the first place 🙄 no idea what they call overthinking when the aim is to try for a relatively normal life, then get treated as if idiots when we expect something they have. How are you feeling, do you have a lot of pain?

I had an enlarged uterus and numerous fibroids. Three had shown on a bladder scan. When it came to lap these became numerous and endo he couldn’t get to. That’s when I had a referral to MDT.

My diagnosis came late, 51, I’d put up with bad periods. Fibroids ended up being difficult to get to. I’d left it way too long.

Don’t let them sway you in not dealing with things, it’s not much we ask for.

Zoe1986 profile image
Zoe1986 in reply to Moon_maiden

I have sever period pains, back lower back ache. The pain gors down my legs and into my feet. I feel old before my time 😚 I just hope my ovaries are not so damaged. Hope! Thanks for your response ❤️

Moon_maiden profile image
Moon_maiden in reply to Zoe1986

I hope you’re getting help with the pain from GP, they can refer you to the pain clinic. It’s not ideal ever taking painkillers, but if it’s needed sometimes we have to. Have you let them know how far it’s extending, could be muscular pain thrown in the mix.

Hi there,

My husband & I tried for 5 years. I had no idea I had endo until they did an ultrasound & saw a large cyst. Long story short I saw a fertility specialist who did my surgery (this is good because they try to keep as much intact as possible to preserve fertility). I had a blocked tube and my ovary was adhered to my bowel. We started IVF shortly afterwards and fell pregnant on the second round. I hope this helps & wish you the best.

Thanks for shining light! I do hope that I can have a natural pregnancy, but if not than there is always IVF like you said. 😊😊

Did they unblock the ovaries?

They ended up removing the blocked tube. The other side was thankfully not blocked though.

❤️

I had severe endo excised, and I wasn’t able to conceive spontaneously afterwards but IVF was successful. A miracle baby if you ask me!

Zoe1986 profile image
Zoe1986 in reply to wanwood

That's wonderful news!! 😊❤️

Hello, endo can affect fertility though it does also depend on where it is 😊 I was told to have my children by 27 if I wanted to be in with a chance of conceiving. My surgery found widespread endo across my pelvis and other organs though tubes/ovaries looked ok. I wasn’t ready for children in my mid 20s so waiting and I conceived by little girl at 29 after a few months of trying, she’s now 16 months. A friend of mine struggled to conceive because her tubes were affected but after her surgery she fell pregnant within two months. I know sadly this isn’t always the case for some ladies but there are positive stories out there ❤️ Good luck xxx

Zoe1986 profile image
Zoe1986 in reply to vb90

That's lovely to hear. Thank you for sharing! ❤️

Hi - i was diagnosed with stage 4 endo years ago - I then came off the pill as i was told i had zero chance of ever falling pregnant naturally. (i only have one ovary and it's covered in endo, as is most of my abdomen). I then fell pregnant immediately with my now 9 yr old son and 'tried' on only one more occasion and immediately fell pregnant with my 5 yr old daughter. Completely miraculous. They're both perfectly well and i went full term -although i did have to have c sections as the space for them was limited by endo surgery scarring and internal damage. But totally unexpected miracles. Good luck!

TennisAM profile image
TennisAM in reply to TamazinG

That's so great and also shows that doctors can be wrong xx

TamazinG profile image
TamazinG in reply to TennisAM

Exactly. My endo specialist was so stunned, but I feel like if it happened to us, it can happen for any woman with endo. X

Amazing!! ♥️💙♥️

I totally understand your worry and had the exact same worries. From personal experience, I felt like my symptons were severe. I was lucky in the sense than when they did the surgery it had affected my pelvis only and none of my organs so they felt my fertility is unlikely to be affected. I guess only time will tell when I do try for a baby. I'm sorry I can't be more reassuring of the situation xx

Thank you Steph. ❤️

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