I can understand wanting to have surgery to get a diagnosis and to rule out anything else - I was the same. I got myself worked up into a total state about them having missed something potentially life-threatening (since all tests and scans came back okay and I was still in pain) that I just wanted the lap to draw a line under it and find out for sure that everything in there looked okay. I'm assuming you've had an ultrasound, pelvic and vaginal? Have you had an MRI? Sometimes they can diagnose endo with those imaging approaches, it depends on how bad it is - they will be able to see adhesions much more easily than superficial endo. But it's worth a try to avoid a surgery...
I'd say...
1) If you noticed things improved with peri symptoms on the 25mcg patch and you haven't noticed any further improvement with peri symptoms moving to the 50mcg patch, then reduce back down to 25mcg - or possibly to 37.5mcg. I'm sure you know that estrogen can 'feed' endo, so whilst you need some estrogen to prevent peri symptoms and for future health,
you don't want to be taking more than you need or you risk making endo worse. Take the minimal amount of estrogen you need to keep your peri symptoms away and no more than that. (That is also BMS guidance anyway - if you increase estrogen to try to address remaining symptoms, but those remaining symptoms then don't improve, you should reduce back down to the previous dose.) You might be able to increase estrogen again in future, but it's best to reduce and stabilise things with the endo now - and once things are stable and fine, you can increase again very gradually if needed.
2) You definitely need to
give the desogestrel longer than a week to work. Probably 2-3 months... But
you should be taking utrogestan continuously as well, even if you are peri. It doesn't make any sense to be taking two types of progesterone/progestin and for one to be continuous (desogestrel) and one to be sequential (utrogestan) - that is only going to confuse your body as to whether it is supposed to be having a bleed or not. Women on the POP take progestins daily so I don't understand why some doctors get very confused about telling patients to use progesterone daily, when needed - they may get breakthrough bleeds, but so do women on the POPs(!). I'm not sure what they are worried about... And if you have endo, you need to suppress it with ongoing progesterone, not stop and start progesterone which is giving endo lesions time to build up for a bleed - just like your uterus does. This is the advice from Chris Mann, endo specialist - if you listen to the Dr Louise Newson podcast and the episode where she interviews him (search for it).
3) If you did want to go back to a combined pill,
Zoely and Qlaira are the combined pills with body identical estrogen in them (instead of the synthetic estrogen in most pills). They do still have synthetic progestins though. And you will need to stop the combined pill at age 50 - in 3 years time - which just means more upheaval around the corner, so it makes sense to try to settle on a regime for many years into the future with the endo. Endo does best with stable settled hormones. (Another reason not to keep stopping and starting the progesterone.) There is a continuous oral HRT called Femoston Conti which you could investigate more if you wanted. The progestin in it is supposed to be good for endo and I think Flossie on here, who also has/had endo, used it very happily for many years. It is quite low dose estrogen though and if you need more, might be hard to increase. (As with all combined HRT products.)
4) There is also the option of
increasing the utrogestan to 200mg continuously. I am doing that at the moment, but have stopped the desogestrel POP to do it. (The POP was working fine but I wanted to try this just because I'd prefer not to take synthetic progestins unless I need to.) But you should be able to take 200mg continuously as well as the desogestrel POP - that should really quiet things down for you, alongside reducing the estrogen to just what you need. Lara Briden (see 6) recommends 300mg of utrogestan daily for endo...
5) With the frequent urination and the UTIs, be sure that you are on
local estrogen too (Vagifem) - many women need that to prevent issues down there, as well as systemic HRT. It is such a low dose, it is not likely to cause issues for endo.
6) Get a copy of
Lara Briden's 'Hormone Repair Manual' - she has a whole chapter on endo and very useful natural treatments you can add in. Zinc at 30mg/day, NAC 3x daily for 3 months then a break. Berberine for an 8wks stretch. NAC has been found to be as effective as some prescription meds for endo:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662115/ She also has a lot of great blogs on the same issues which I don't think I'm allowed to post here but you can search for 'Lara Briden blog endometriosis'. She recommends up to 300mg of utrogestan daily which many US doctors do - so using 200mg daily is not 'out there'...
