Advice needed!

[Becky2894]

Hi, I have just discovered this community and it’s so nice to be part of something where people understand. I’ve (after ten years of pain, abnormal bleeding etc.) finally been referred to gynaecology about a year ago. I had my MRI scan about 3 months ago which showed thick adhesions between the back of the uterus and the colon and also thickening of the uterosacral ligaments. I am due to have robotic surgery but the waiting list is a year.

I have been given no info on what this actually means fertility wise, does anyone know? If it worsens over time I would rather try for a baby sooner so I want to know what I should be doing.

I’m also having really bad bowel problems which I assume to be related to the above - I’ve been given laxatives but surely I can’t be on them for a year?! Any help or advice would be hugely appreciated, it’s getting me so down now and so worried about the fertility stuff

For anyone who has had to try and go private, what did you do?

Thanks everyone x

[Lindle]

You have severe (rectovaginal) endo. I assume you are having the surgery at a specialist endo centre.

This presentation of endo would usually involve the ovaries, especially the left, being caught up in the dense adhesions. Do you know if this is the case?

[Becky2894 in reply to Lindle]

Thank you for replying and sending this, it doesn’t even say where the surgery will be it just says I have been listed for robotic surgery and when I rang they said the waiting list is about a year, I don’t know how I can wait pain wise but most importantly I don’t know whether it means I should try for children now or wait? I’m on a load of laxatives to help with the bowel symptoms but surely I can’t be on these a year? It feels like such a viscous cycle. The MRI results state that my ovaries are okay.

[IB15]

I would recommend you ring the gyny department and ask to speak to a nurse or consultant about your options in the meantime. It's also important to ring and ask where you are on the waiting list often and make sure they are aware of your current symptoms. I rang all the time, the team where always very kind but couldn't always offer appointments or push dates forward. I know it is not always possible but I booked a private appointment with the consultant I was on the waiting list with, (Endo specialist) this helped so much as I could discuss what to do in the meantime about fertility/ risks etc. and ask all the questions I wanted to ask. It was around £100-200 I think.

Discuss your treatment options with your Doctor, there are lots of options and you should be able to make an informed choice. Make sure at all points that you explain that you are concerned about fertility and that's important to you, they will prioritise that for you.

Sending you lots of love, if you have any questions I am happy to chat x

[Becky2894 in reply to IB15]

Thank you so much for taking the time to reply to me I really appreciate it and that’s great advice too. It turns out my gynaecologist doesn’t do private appointments but I have asked for a recommendation for someone who does that I can be passed onto. I think I’d rather be in a lot of debt than continue in this pain for over a year longer! I’m going to make sure that pushing for answers to my concerns and questions about fertility is number one priority as I’m just so worried I’ll get to two years time and realise I can’t have children. Thank you again and I’m sure I’ll have more questions soon. Xx

[Dee_EndoUK Moderator Endometriosis UK]

Hi Becky

First of all, a really warm welcome to the forum - it's lovely to see that some of our members have reached out to you already.

If you haven't already done so, there's a wealth of information on our website that you may want to check out. The following link in particular may be of interest as it specifically focuses on endometriosis and fertility, with a useful webinar on this subject to watch too. You can find this at endometriosis-uk.org/endome...

Alongside the forum we also have face-to-face support groups all over the UK, where you can discuss endometriosis and the issues you are experiencing with other sufferers. You can find out if there's one in your area here: endometriosis-uk.org/find-a...

Take care, wishing you all the best x

[Becky2894 in reply to Dee_EndoUK]

Thank you, what a great community this is. I already feel more seen and heard than I have done for years by professionals in this! I’ll check out those links now as they sound really useful.

Thank you again, much appreciated x