Stage 3/4 endo requires further surgery after diagnostic laparoscopy

[EmaW]

Hi everyone,

First time poster here. I signed up a few years back and have now come to a time where I’m not quite sure what to do. I feel maybe some of your experiences or words of advice may bring some much needed inspiration and boost of willpower?

So long story short, about 4 years ago, I started experiencing endometriosis like symptons. My sister had had it few years before and it sounded like my mum did too when she was younger.

After a battle with my GP I finally had a diagnostic laparoscopy in December.

I was diagnosed with stage 3-4 endometriosis on the day by the surgeon. A relief that I finally had a definite answer but devastating as there isn’t a cure. I thought he had cleared it and advised me to start trying for a baby, only to find a few weeks later in his follow up letter that a lot of it still remained between my uterus and rectum.

I’ve just had my follow up with a colleague of my surgeon who basically gave me 2 options: go back on the pill to manage the pain and have additional surgery or if I want children to book in with my GP to be referred to a fertility clinic to discuss IVF.

Devastated is an understatement. I feel so down, so lost and not sure what to do. Every month that goes by the pain returns and gets worse, I feel like the surgery was a waste and can’t bare the thought of going through this for the rest of my life.

Has anyone had further surgery on their rectum? Or know much about the risks or effectiveness?

The doctor mentioned I’d get a referral to an Oxford specialist clinic? Which they could give me if I want it...I was just so focused on the fertility sides of things we didn’t really talk over the further surgery, but I’m now starting to feel like maybe I need to try it before the endometriosis has the chance to get worse and cause further damage in that area...

Sorry for such a long post and thanks for reading.

Emma

[Cactus80]

Hi Emma,

I have just had a diagnostic Laparoscopy 2 weeks ago with actually the same outcome but didn't do anything during mine. I was diagnosed with rectovaginal endometriosis and was given option of surgery with a risk of a stoma bag, IVF or nothing and try for pregnancy naturally. After thinking I have called the surgeon and asked to be referred back to gynaecologist for more info about the surgery. I want to know the risks of not having the surgery and the chances of it getting worse. I felt very deflated too after this. I hope you get more information to help you work out a plan.

[EmaW in reply to Cactus80]

Sorry to hear that you’re in the same boat! I hope you’re recovering well and you get the referral. A stoma bag or something similar is what I was afraid of so I kind of kept telling myself I don’t want the additional surgery but I can’t help thinking now about it getting worse...

[Cactus80 in reply to EmaW]

It's so difficult to know what to do with so little information to hand. Yeah my recovery going fine thanks and back to work today. Hope you get on ok.

[Koryu]

Hey there,

I have had an initial lap and then a major surgery to remove as much of my stage 4 or so endo as possible with an endo specialist as it couldn't be left alone, so I know my case is different to yours. FYI before I say this. ^^ After testing we also discovered that the endo had penetrated the rectal wall so a piece was removed by a specialist in a joint surgery. I lost 8cm, the Drs were awesome and I got away without a stoma and a lap only despite everything. They rather admired their work after...and took snapshots of my bellybutton scar so one could show the other how small they kept it. XD Drs... Also, I am fine on that front now, no severe side effects or anything. Some slight impact, but nothing not manageable. I get constipated a bit more easily and I have to go more urgently as a piece of rectum is missing, but it has settled down well from Oct 2017 so the latter is not much noticable and the former might be to do with my cysts now too.

Get yourself referred to an endo specialist if you want more info about surgery etc.. They didn't remove any during the first lap for me as I wasn't booked in for more than an exploration, you see. They said they ran out of time to remove any that day. *sigh* Gutted is only way I can describe it. The pain was a little better from a cyst removed, but... so all the empathy. I also found out from my letter. I was too out of it after the lap.

I'd go via an endo specialist first and then go fertility, but it depends on where you are and what feels right for you. Do you even want kids right now? Do you want a treatment plan for the endo and care?

I remember seeing the colleague of my surgeon for the first post op meeting and he was...ah...unhelpful. I say, go back to your surgeon if you trust him and do what feels right to get the full answers.

[EmaW in reply to Koryu]

Thank you for your reply! It sounds like you’ve been through a lot and with a good outcome (& bellybutton) too haha. It gives me a bit of hope what hospital did you have the additional surgery at if you don’t mind me asking? How long did it take you to recover?

And I can’t wait to be able to have children so it’s pretty heart breaking to find out there’s a possibility it may not happen now that my husband and I are finally ready...

Am I right in thinking that if I am referred to a specialist they will assess me first and have a consultation? Or would I just speak to my current gynacologist before signing up to the surgery?

Thanks again, really appreciate the help.

[Koryu in reply to EmaW]

Hi EmaW,

Apologies about the delay. ^^ I didn't mention it as it wasn't relevant in my last message but I had been waiting for surgery to drain cysts on my ovaries as my husband and me are trying for a child and I couldn't attempt IVF with the way it was (apart from the pain levels etc. and the other problems, but that is a different level to the story). My surgery was pulled forward at short notice due to a cancellation, so I wanted to recover some before I replied to you.

You can probably see from this that I am familiar with the stress and worry about fertility and endo.

So, endo itself doesn't have to mean you can't have kids. It depends where the endo is and what if effects and then there are range of options and pathways.

In my case: The decision for this round of lap surgery came from the fertility clinic. I went through all the standard tests and they realised I was fit and well, apart from the endo and in particular the cysts (the ones on the left added up to about 11-12cm in length, and I had two on the right too, so I continue to be a bad case endo cookie. Again.*sigh*) The plan is for me to go through IVF now, as they couldn't remove the cysts or they'd damage the ovaries too much this time. I had cysts removed before, you see and one fallopian tube. But I am still not a write off! Wohoo.

So, after the lap just now I should be back to normal in two weeks pretty much and I am recovering well at present. After the surgery on the rectum I took longer and I stayed in the hospital for an initial couple of days for recovery. Then...hm...three weeks recovery overall? Hard to say, I was between jobs so could take it slow. Every person is different too.

My gynae is an endo specialist so that helps, but when I was referred we had an initial assessment first before we went the surgery route. You should always have a consultation before surgery and be confident in the treatment plan and options. It is simply that a treatment plan can vary between endo and fertility management.

If fertility is a key priority maybe get a referral that way unless pain management needs doing? My priorities before this one were on health and then fertility. I really needed to have the endo removed, it wasn't up for debate before the major surgery. The initial hope had then been I'd conceive naturally after. Instead I developed those cysts and we find ourselves in my current place on this adventure.

Which part of the UK are you in? I am in Greater London. So my hospital might not mean anything to you.

Feel free to message me on here too or ask away. I should reply faster again now. XD