what to try next?

[KML22]

Hi everyone I don't think I've posted before, probably because as awful as endo is, I've been lucky in a lot of ways. . I was diagnosed via laparoscopy in 2015, and I live in a city with an accredited endo centre, so my surgeon knew what he was doing. He found and excised a few spots in various places, but the headline was a lesion in my pouch of douglas, which was causing most of my symptoms all by itself. I had less pain and other symptoms for maybe 6 years after surgery, before things started slowly getting worse again. This month has been horrible - I've been in pain at some point every day, really bloated, overactive bladder, bowel symptoms, mid-cycle bleeding, all the usual suspects.

I'm wondering what to do next. I had anorexia pretty badly in my 20s and my bone density still isn't the greatest, so I've avoided progesterone-based treatments. I could get the mirena since that isn't supposed to have as much of a systemic effect, but the position of my internal scar tissue means even cervical screening causes extreme pain (I have to get it done at the colposcopy clinic for their gas and air lol), so I'm wary of anything which would need inserting. I'm 40 now and wondering whether I could talk someone into giving me a hysterectomy. But I'm guessing that my current situation is being caused by regrowth of some of the deep endo, so I don't know if a hysterectomy would do much good on it's own. If I also had an oophrectomy I'd really want HRT to protect my bone density, and then any remaining endo might respond to the oestrogen in that...so I keep going round in circles in my head. I've still not even got as far as asking my GP for a re-referral.

Not sure what I'm looking for other than to chat to anyone in a similar position!

[Sunset-lady]

I'm nodding as I read this as it's just such a rollercoaster isn't it! I'm constantly choosing between my mental and physical health with this. The fact that endometriosis returns is the issue, but it could help your pain if you have a hysterectomy. I would definitely find out about the coil. I haven't heard about progesterone only affecting bone density, and I've read a lot on this. I totally agree about estrogen though as I know my body reacts to it immediately but my brain loves it. As you get older (51) you need the estrogen but it makes me bleed uncontrollably. I've increased progesterone (natural) and lowered estrogen and I'm on zoladex which is now working. But I feel low all the time. Even with exercise and supplements I feel as if I'm living life behind a glass wall. I'm still getting over being anaemic so I'm hoping it stops eventually x good luck lovely x

[SavageGold]

I think I know what you mean about bone density but as with everything else it's only been small studies to check the theory. They haven't followed up on the studies with a control group of people doing lifestyle changes to increase bone density (as that too is a factor for bone density). I have been progesterone only with increased dozes since 2008. I was completely malnourished as a child from neglect, undiagnosed coeliac and then endo for 4 years. I was ready to die. But now I'm a bootcamper, a military combat student, an obstacle course racer, a triathlete and I'm moving up to management in a new physical hands on job. I won't let them do a bone density test because my personal feeling on the issue is I'm not normal. My life is magic with the Depo Provera injection and my quality of life is more important than having that bone density number looming over my head. The key to bone density is calcium and its binders, plus using enough physical force on your bones in all directions to signal the body to uptake calcium, to stop dismantling the bone cells and to increase bone mass cells instead. Its not all about progesterone being the bad guy. I can't have the coil either for CSA and assault as an adult I can't have anything in there for previous damage. My uterus is also glued to my back wall and the top upside (the fundus) is backwards thanks to endo so the coil won't stay in without pain.

I hope that helps your thoughts. And I hope somebody on here can give you insights into hysterectomy.

Please don't feel I'm having a go like exercise is the king of health. I'm lucky now. But boy do I remember the pain and fear and exhaustion and depression of 3 years ago when they cut of my depo injection while I was being abused. I couldn't do anything. The pain and bleeding and bowel problems were debilitating.

[allym92]

Just a small note, you can get HRT that is progresterone only... I know its a double edged sword cause that might be not as effective for protecting bone density but the combined might flare up endo symptoms. But maybe something to chat with your GP with even in the future when the time comes. 💙

Sorry everything is flaring up for you again, its awful having so little choices x

[moonghost]

It’s a tough decision to make, and I really understand your caution. Often we’re recommended things without our actual physical reality in mind. Have you asked for a scan of any kind? It would be useful to find out the extent your endo has made a comeback so you can decide which route to go.

The literature for zoladex + add back HRT suggests that there is minimal bone density loss on a 6 month course, but sudden menopause is quite tough. I found it difficult, even with Duloxetine + my ADHD medication probably mitigating side effects.

Someone else has mentioned the injectable options, they would seem a lot more preferable to the Mirena given your cervix scars.