Lots of questions after first gynae appointment

[ElephantJuice500]

Hi all,

I had my first gynaecology appointment today after experiencing endometriosis symptoms (specifically rectal bleeding during period and intense pelvic, back and leg pain especially related to bowel movements). The gynaecologist said its highly likely to be endo on bowel (mum has this too).

From reading this forum, info on Endometriosis UK, NICE guidelines and RCOG guidelines, I was expecting this would trigger a referral for MRI (had US previously and was clear), and possibly to a specialist endometriosis centre given possible bowel involvement.

The consultant said laparoscopy isn't an option due to possible bowel involvement (said they wouldn't be able to see it). I wasn't 'wanting' this anyway, since my pain is currently isolated to my periods and I don't want to risk making anything worse for the time being, especially since I don't have a solid diagnosis. When I queried MRI, they said this is only done post-laparoscopy so not an option.

I was told I 'have' to go back on the pill, since this will help pain and stop endo growing. I have heard that the pill does manage pain, but I've never heard that it actually stops endo growth. My pain is currently mostly manageable with Ponstan, so I expressed my priority is to find answers as I'm 23 and would like to have children in the future - this could help me plan. I was told that if I want children I should go back on the pill ASAP before it grows more.

I've been on the pill before, and have only just got my periods back to being regular 2 years after stopping the pill, so I am reluctant to go back on it for this & other reasons. However, if it does stop growth I would of course consider it as an option.

I was just wondering if anyone else has heard that the pill can stop endo growth? Also, has anyone with bowel endo received a diagnosis from an MRI instead of a laparoscopy? And does anyone know if I should be referred to a specialist centre?

Thanks ❤️

[FrecklesandFlowers]

Hiya, I think what they mean by 'the pill can stop endo growth' is that the pill stabilises hormones which are linked to endo growth and - depending on how you take the pill - can reduce the number of periods you have, also minimising endo growth. For example I take the combined pill two boxes at a time so I only have 3 periods a year. It's definitely trial and error though, the first 3 brands of pill I tried were horrendous and I didn't take to them well, and it took me roughly a year to get used to this one. Not sure about your other questions but I hope you get some answers!

[KittyTherapy]

Hi,

I just wanted to add that I was offered an MRI before laparoscopy as it can help with diagnostics. I had an ultrasound before that which was clear.

I've found that the only way to get what you want is to be direct. It's uncomfortable in the moment but you really have to advocate for yourself. If your feeling unsure about the gynae Dr then you can ask for a second opinion by someone else. You can also request an onward referral to a specialist (BSGE) centre.

My care was all under general gynae but I asked to be referred to a specialist centre now which my gynaecologist has done but I had to ask for this, it wasn't suggested to me once. Currently awaiting to hear from gastro as I've been having increased bowel / gut problems and I'm not sure the cause (?endo).

I know the specialist centres have certain criteria but if it's suspected/confirmed bowel endo i think that you have more of a chance of being accepted.

Was the ultrasound external (on your tummy) or internal (transvaginal) ? I ask because I think having both is useful, an internal exam can help show if there is presence of deep infiltrating endo - which having this would mean a more likely chance of being accepted at a specialist centre too.

Not sure about the pill - I opted for surgery and mirena coil but recent scans have shown the endo might already be back. I have an ovarian cyst and my ovaries are in a fixed position again.

Just awaiting to hear from BSGE centre and gastro now.

My advice would be to be direct about your wishes and don't let them make decisions for you if your not happy. It's your body x

[Pelvic_pain]

I had internal scan and examination to diagnose endo, but then MRI to confirm bowel involvement at which stage I was told I have to be treated in an endometriosis centre so was then referred

[Marcia71]

you should have an mri before surgery nowadays as that can diagnose deep endo or show if endo is affecting bladder or bowel. It sounds like the team you’ve seen so far aren’t trained enough in endo.

To get to the specialist centre you need to have a diagnosis of severe endo or endo affecting bladder or bowel and nowadays that most often comes from mri.

If you look up your local (or preferred) endo centre on bsge website it hopefully will mention their radiologist and then ask your gp to refer you to them for an mri for endo. They may choose to do an ultrasound. But as they are trained to spot endo they will k know best course of action. Both scans are good at seeing deep endo as it’s down to the scanner not the actual scan. Then you can be referred to the bsge specialist centre.

[Hannah818]

I've had similar issues to you, I kept going back to gp to ask for mri of bowel/pelvic area (think I went back 4 times!) Becauseof bowel issues. Finally gp said she will request and contact gynae who I sometimes see at bsge centre, I'm waiting to hear back Definitely ask for bsge centre and MRI, keep going till someone listens. It's so frustrating and tiring, but if it gets you clearer answers will hopefully be worth it.

Wish you best of health xx

[fen5]

You need to ask for an endo specialist team BSGE Centre and they will know what to do. Alternatively you can Google those specialist in your area and book a private consultation to speed things along, of course this depends on finance 8f self funded or Insurance

[ElephantJuice500]

Hi all, thank you all for your help.

I found out that my Dad’s Benenden cover also covered me, so decided to take all of this private too. I had an MRI and it’s confirmed deep infiltrating endo into my bowel wall.

Glad I did this, as wouldn’t have got anywhere without going private. I’ve asked my GP for a referral to specialist centre now, so will see how this goes. I’m also back on the pill under the consultants advice (I’m not thrilled about this, but feel happier knowing that it’s serving a purpose rather than being a channel to fob me off for longer!)

Thank you all so much