Coping strategies when hormones aren't an option

[Vickal]

Quick background; I'm 42, diagnosed 8 years ago, endo found with a laparoscopy. Bladder and uterus stuck together with adhesions, overy stuck to appendix also endo in p.o.d. Surgeon told me this couldn't be removed due to possible bladder damage. Pregnancy achieved with IVF. No improvement to endo following pregnancy. Second lap by endo specialist told again that adhesion between bladder and uterus cannot be removed, the area is too large. I decided to manage my pain with combined pill. Taking packs back to back to minimise periods, having maybe three or four periods a year, much more manageable.

So I was coping OK. Then I had a "probable TIA" or mini stroke. Much investigation followed and told to come off the pill due to stroke risk. Tried the mini pill which made me bleed constantly. So had no choice to go back to no hormones.

I'm kind of back to square one. Can anyone offer any coping strategies they use to get through the monthly pain? Knowing that it's probably getting worse each month. The knowledge that it's coming each month and that I have to work and take care of my son regardless? Feeling rather down at the moment. Willing to try anything to help manage my life with this.

[Char411]

hello my lovely and I’m sorry to hear this. I’m 43 and have also had to come off the pill and anything hormonal and my endometriosis is gradually getting worse each month. I recently had a complete uterine ablation to help with the heavy flow and while that’s made my periods minimal flow wise the pain is horrendous the week before, during and after so I currently get one ok week pain wise and I have to struggle to work.

Sorry I don’t have any answers to help I just wanted you to know you aren’t alone. I use 30mg of codeine and ibuprofen for pain and a heat pad and I have oral morph for when it’s too much to bear. What have they given you to cope with the pain x

[Henley13]

Is mirena an option for you? It took a while for mine to settle so quite a bit of spotting but once it did (about 4 months in) it's helped me no end. I only have a very scant period now and pain is less. I don't tolerate hormones well at all but have found Mirena OK. I also use accupuncture which has helped me a lot but doesn't work for everyone.Sorry you are struggling, it's so all consuming and hard. Sending strength.

[Cailleach]

If you haven’t seen a Gynae specialist recently I think you should - with your level of endo I would think you should be seen at a specialist service (BSGE) - not sure if that is where you were seen before.

They should be able to advise if there is any hormone type treatment you can have or any surgery not involving the bladder/uterus adhesions.

I am no expert on this but I think that the stroke risk is associated with oestrogen, therefore I wonder if some form of progesterone like Provera or the coil would help, or medical/ surgical menopause if that is something you would consider,

The BSGE should also be able to link you to expert advice on pain relief. There is a range of meds you can use alone or in combination,

Other posters have suggested some coping strategies for pain , other people on here have posted about using Tens machines and /or acupuncture as well as diet changes, With diet, the only thing that helps me is avoiding red meat, though I think cutting down on sugar has also been helpful. If you look at old posts on here you will get more info on these kind of topics.

Hope you get some improvement one way or another.