Info on how to support partner

[Dylanfzj]

Hey,

My partner has, as of this month, had her second surgery to remove cysts etc. This time round the rate of growth was far more dramatic and it's determined she has the 4'th stage of Endometriosis. She's also only 25.

She will be going in for a checkup and, obviously I'm concerned, and she doesn't know what questions to ask her doctor.

I thought of a few to begin with eg will she need surgery every couple of years, what are the signs I should look out for? Things like this.

As I don't suffer form this, I can only read material about it, and therefore don't know the critical questions she should be asking. Any help would be greatly appreciated

[Moon_maiden]

Hi, it’s great you are asking, having support is invaluable 🙂 The endo UK site has great info for consultations, questions etc. Is she with an Endometriosis specialist? With stage 4 she should be under a BSGE registered specialist, the NICE guidelines are helpful and gives the process for GP’s and consultants to follow. I would hope if she gets the correct treatment she shouldn’t need surgery too often as this can cause adhesions as well.

They may suggest something like Zoladex, this can sometimes help, it brings on temporary menopause, it may calm the endo down. It didn’t do anything for my pain, but there was a lot going on. Everyone is different with this and incredibly hard to understand, even going through it, sometimes the answers aren’t there. Some doctors suggest the pill.

I always keep notes of symptoms, pain.

If she’s part of a BSGE centre there will be access to a pain consultant, if not ask GP for a referral to the pain clinic in the meantime. It’s important to have decent pain relief.

When you are going through it directly it’s helpful to have someone that try’s to understand, listen and care. It can be hard to do physical things, but we still want to try and carry on, it just might take longer 🙂

Not sure if this helps, apologies for wittering

[Dylanfzj in reply to Moon_maiden]

Thanks for your reply

She doesn't have a specialist designated to her, she's currently in a European country, so the only specialist available is a gynecologist . The complication for her is due to chronic migraines which means a lot of treatments may not be helpful, annoyingly.

I've made a note of Zoladex and have bookmarked the NICE guidelines, that looks very useful. I'll ask her to keep a pain diary, and suggest to have an accompanying diary which isn't filled with just pain, to keep her spirits up.

I'm currently reading a book named "ask me about my uterus" about someone who went through a similar thing to my partner, not sure what else to read besides NHS page on it, to determine what questions she should ask

Thank you very much

[Moon_maiden in reply to Dylanfzj]

There will be endo specialists, they’ll be gynaecologists, like anything else, they have their interests in a key part, in any country. The healthcare can be amazing in other countries. Research is key in all of this. There are consultants who have written books on endo, what to do, etc.Diary is a great idea and just searching the forum can help. If she will, it may help to post here as well, it’s amazing for support 🙂

[Dylanfzj in reply to Moon_maiden]

I'll have to check with her about availability of an endo specialist, it's a small country and due to lockdowns I'm not sure if there is one, or if one is available where she is located.I will research more and go through the forums as you suggested and will forward her this site ASAP

Many thanks

[Anna_EndoUK Moderator in reply to Dylanfzj]

Hi Dylanfzj, just as a side note, I've had migraines since I was a teenager and Zoladex/Prostap (both GnRH analogues) seems to have really helped them. I've been on Prostap for two years now and had Zoladex for a year before that and I haven't had a migraine since taking them - silver lining...

[Dylanfzj in reply to Anna_EndoUK]

Oh that's good, I'm glad that migraines are, touch wood, a thing of the past I shall relay this info to her so she can ask the doctor. Thank you

[stephersb]

Hello,

Firstly I think its amazing you are here and doing your best to support your partner. As someone with endo, I don't think I could manage it without my partners continued support so think its brilliant you are doing that.

If you aren't trying for a baby at the moment, would the coil help her keeping it at bay? They've removed the endo with me and fitted a coil to keep it at bay. Not sure how things will go when my partner and I try for a baby in a year or two. :/

Good luck and keep supporting her!!!

[Dylanfzj in reply to stephersb]

We aren't trying at the moment. I don't know where she's at with that thought path yet, nor do I for that matter.

I can get her to ask about the coil, I know that whatever version of the pill she was on really messed her up, hormone and migraine wise, so will need to research whether the same result will come form the coil

Thanks for the suggestions ^^