Treatment options

[Peachii]

Hi guys,

Just wondering if I can get some advice from all you lovely endo warriors out there!

Little bit of background: I'm 24, can't afford private treatment so all through the NHS. I also want kids in the future, but not just yet.

I had my first lap almost a year ago (start of May) where endo was discovered in a couple places. I found the lap & laser did nothing to help my pain, if anything I found it aggrivate it more and my pain got worse (I'm in pain about 3/2 weeks out of the month).

In September I started zoladex monthly injections and found it helped, but I massively struggled with the side effects of the treatment. In particular the bone pain. I felt like I just swapped one type of pain for another. I finished this treatment in February.

Since my lap, every time I saw my gyne I would ask potential treatment options, and got thrown onto zoladex. During zoladex I kept asking next steps but every consultant would dodge "what is the next treatment option" or "what other treatment options are there". I was meant to have a follow up appointment at the start of April, but of course that's cancelled for the unforeseeable.

Just wondering what other options and treatments people have tried. What is and isn't as effective etc. I'm scared when I next finally have a follow up they'll be like "let's just monitor the situation", or suggests another lap but I can't afford the time off work (I won't be able to pay rent and bills on SSP. I have a physical job so took me 4 weeks to heal enough to go back to work as I got an infection in my incision last time, which I could afford as I was a student with student loan at the time).

When my appointment does happen I wanna be equipped with as much knowledge so I don't get fobbed off as much (as I have been a few times).

Thanks in advance everyone ❤️

[wanwood]

Hi,

I'm sorry you feel like you're being fobbed off and your gynaecologist is not being straight with you. It is so frustrating and even harder now at this time.

I hope this isn't bad news but the medical treatment options fall into two categories: hormonal and surgical, and it sounds like you've tried both already in one form or another. Private treatment won't make a bit of difference in terms of what your options are, and you'd most likely be seeing the same consultants as you're seeing now. The difference is that it would enable you to see someone much, much more quickly.

The hormonal options are contraceptives (the Mirena coil, the pill, the jab) and hormone blockers to induce menopause (Zoladex, Prostap). Did you have HRT with the Zoladex last time? It's possible that if you didn't use HRT, that would explain your bone pain. HRT should help with the side effects. The HRT I used was tibilone and it helped me anyway. You could also ask to try Prostap + HRT instead of Zoladex. It's just a different hormone blocker but maybe if you didn't get on with Zoladex you could try a different one and see if it's any better. They're all basically the same though.

I think you know what the surgical options are, but basically, you can have the endo cut out (excision), or burned off (laser). Excision I think takes longer to heal from than the laser. And you don't want too many surgeries close together, better to really try to limit the number of operations you have to prevent more adhesions from forming.

Aside from treatment, you could ask for better pain management (different / stronger drugs).

I suppose there are holistic things you can try like changing your diet (cutting out various things like alcohol, gluten, dairy and see if it helps), exercise, etc.

Your job - is there any chance you could think about changing your job to be less physical? Is your employer understanding?

Check out the Endometriosis UK web site for more information, and see also this:

nhs.uk/conditions/endometri...

xx

[Peachii in reply to wanwood]

Hi wanwood,

Thank you for your reply!

I've got the jaydess coil (as my doctor said the marina was too big for my cervix as I was in worse agony everytime i was contracting/ovulating/period) which works as well as I think any birth control option can.

I was told that I can't have HTR with the zoladex as then they'll be no point in doing the injections, as we're taking out the hormon that causes the pain? I did ask for it but I was basically just told no. The most I got was little vaginal dispositories as my dyspareunia got much worse. But that's only localised HTR so it wouldn't effect anywhere else.

I'm just worried the person who did my surgery didn't get it all, when I went for my surgery at the hospital I go to I had a pretty traumatic time, and to this day I haven't been able to talk to my surgeon about what he saw/found. Only very basic notes. I've looked into a bsge centre near me and wondering if it might be better to try and get reffered there, as I looked at their criteria and I think I fit it.

I do a lot of the holistic stuff, dietary changes (I eat very little meat, I'm allergic to dairy, dont have soya, and drink alcohol maybe once every 3 months).

I talk to my gp the other day due to the amount of pain I'm in currently. They said they won't give me anything else as they don't want me taking stronger painkillers for a longer term condition. I'm on codiene, mefanamic acid and otc paracetamol.

With my job its a stop gap, I'm trying to get onto a psychological wellbeing practioner trainee program (: but they're very hard to come by. But I'm in a retail job but its one of the only companies near me that pays London living wage and I desperately need the money. Other jobs I'm not qualified as I studied in psychology. I do look pretty often as I know I can't keep going on like this.

Thank you xx