Testosterone-based treatments for endo

[Malachitegoose]

Hi. I am having my first appointment with specialist endo consultant on Monday. I am non-binary and 43. I was diagnosed with endo when an endometrioma was found on my right ovary during elective laparoscopic tubal ligation sterilisation surgery I had at the same time as endometrial ablation.

After nearly two years of frequent severe pain episodes I can see that stress triggers pain and diet (particularly wheat, caffeine and not enough fruit) exacerbates the pain. I am currently taking naproxen with omeprazole at the first hint of pain as it no longer follows a pattern that I can trace. I also take co-codamol when the pain gets too much and in the night when the pain is bad I take amitriptyline before bed. I now get pain on right side as well as left, which travels down my leg. I am really concerned about what all these pills are doing to my gut biome and the impact that has on my physical and mental health.

I'm imagining that the Dr will offer me hormones first, which I will turn down as I have never got on well with hormones due to their impact on mental health. Then he will offer to put me into the menopause (prostap?) which scares the life out of me. I guess if that's what I try first I will need to request HRT at the same time. However as a non-binary person I am thinking of requesting testosterone-based treatments instead. I have read that they aren't recommended due to side effects, but has anyone else tried them?

[altynova]

Hello! It may help. In Russia they previously used testosterone treatment but today they are not. Officially it is not approved. I used it in mini dozes, it really helps, but I cancelled it because of side effects. Do you have your endometrioma with you or were you operated?

[Malachitegoose in reply to altynova]

Yes I still have my endometrioma. That's interesting that you tried testosterone treatment. Do you mind me asking what the unpleasant side affects were? What treatment did you have after?

[altynova in reply to Malachitegoose]

Dear MalachiteAli!

I’m impressed by your experience in fighting with endometriosis. I used Androgel, which contains testosterone, in mini-dozes for 3 months. It started well, my endometriosis calmed down, less symptoms. By the end of the second month I started getting nervous even aggressive, brain frog, and finally irregular heartbeat which was the most unpleasant! And it made me stop using it. As far as I know some women are quite happy with it, but not me. But I have my endometrioma excised at the laporoscopy, which really even made my endo symptoms even worse. I think now that operation is not a solution, maybe in some cases. All the best to you!!!!! Good luck!!! We have no endo specialists and it is a long way of trying different medicine for us here. Doctors usually offer only operation as a solution or sometimes dienogest. And that’s all!🌼🌼🌼

[altynova in reply to altynova]

Brain fog, not 🐸 frog, sorry!

[Malachitegoose in reply to altynova]

Thanks for your reply. I'm sorry there aren't many options for you and that excision didn't help. Thank you for sharing your experience. I think that if things do not get better, that reducing stress might be the best option for me, so working in a lower stress job or maybe part-time, but I don't know how we will manage for money. I think I am getting brain fog these days anyway, maybe perimenopausal. Brain frog sounds more fun! Good luck to you also with managing symptoms for yourself.

[EndoRabbit08 in reply to altynova]

Hello there. Just to say I came on here right now because my endo pain and bleeding had been terrible since yesterday and I was searching for a few answers but when I saw your ' brain frog' it really made me laugh. 😁. Thank you for cheering me up. 💐

[Dee_EndoUK Moderator Endometriosis UK]

Hi MalachiteAli

It sounds as if you've done a lot of research regarding possible treatments. If you haven't done so already, you can download our treatment pack at endometiosis-uk.org/endomet.... On page 3 it refers to Danazol and Gestrinone, which are derivatives of testosterone. These lower oestrogen levels which directly switches off the growth of the endometrium (lining of the womb).

Wishing you the very best of luck with endometriosis treatment - hope you find something that works for you.

I'm afraid I don't have any experience of testosterone-based treatments but hopefully some more forum users will reach out to you to share their experiences.All the best!

[Malachitegoose in reply to Dee_EndoUK]

Thanks for your reply. I have done some reading, but it's really hard to know what's best and what the doctor will recommend.

[Hidden]

HelloSorry to hear about your persistent pain. As you already have a confirmed diagnosis, perhaps you might ask your consultant to consider excision surgery rather than a hormonal treatment. Given that previous hormones have impacted badly on your mental health, I'm not sure that a testosterone based treatment won't have the same (or worse) effects. I'm assuming that by referring to your non-binary identity, you're indicating your awareness of the potential masculinising effects of testosterone and your willingness to accept this. However, the effects of testosterone on female bodies can impact negatively on the cardio-vascular system and on mental health, as well as causing painful vaginal atrophy, so I'm not sure that this would be any better (and may well be worse) than other hormonal forms of treatment. Hopefully your consultant will be able to talk you through the pros and cons of the various treatments available, but it would be worth asking about excision surgery at an early stage as I imagine the waiting list will be fairly lengthy.

Best of luck with it.

[Malachitegoose in reply to Hidden]

Thanks for your reply and the information on side effects. I will have to consider all the options carefully. I'm not keen on surgery. I eat a good diet, spend s lot of time active outdoors and hardly ever used to visit the doctor. I was breast fed and breast fed my kids; I was a born at home without a doctor and my kids were too. I am not an antivaxxer and will take medication when necessary. But I'm trying to express that I'm wary of taking medical advice at face value as the evidence is always changing and think that no intervention may sometimes be better than surgery, though I would never judge others for their choices. I hate the 4 different medications I have to take now for endo pain.

I only started getting severe pain from endo after I had my laparoscopic sterilisation surgery, which I asked for at the same time as having the endometrial ablation I had been advised to have. I did have other endo symptoms before but they had been discounted by the gynae as just dysmenorhhea or just a bit of pain etc by me. I know it may not be true, but having never had surgery before in my life and then afterwards developing chronic pain has led to me associating the two things. If I can avoid surgery, I will. I am switching to the low fodmap diet and will ask for an MRI to see the extent of the endo.

Sorry if this is tmi but vaginal sex hasn't been a thing for me in some time now anyway, so the vaginal atrophy won't stop me from trying testorone treatments though I will be very careful about my mental health. Thanks again for the info, it gives me a starting point for discussion with the consultant.

[Hidden]

Hi again MalachiteAliI understand you want to keep medical interventions to a minimum and, as lots of posters of here can testify, surgery doesn't always do the trick. I think the adjustments in your diet are a good place to start and physiotherapy can also help with pelvic pain management - particularly pilates-style core strengthening exercises. I would still be very cautious about testosterone - vaginal atrophy causes rather more serious problems than interfering with your sex life and I've read about many transmen who've experienced such severe and chronic pain from testosterone-induced VA (and PCOS) that they've ended up having to have a hysterectomy/Oopherectomy. I believe very low doses of testosterone are used as a part of some menopausal women's HRT regimens, but the balance of risks/benefits of this are not entirely clear and, as altynova's experience demonstrates, the potential effects on mood, cognitive function and cardio-vascular health are also not to be taken lightly. With treatment options for Endo so limited, I think the least worst course of action is the best we can hope for at the moment - good luck!

[Malachitegoose in reply to Hidden]

Thank you for your reply again. I'm sorry if I seemed to downplay the impacts you stated. I realised I didn't say anything about cardiovascular risks you mentioned but I did go away and do some reading on trans websites and menopause pages and there are a load of risks, so I'm not going to rush into anything.