Diagnosed but…. What now?

[Guineafowlrach]

I’ve been diagnosed with ‘severe’ endo and although it is great to finally know what it is - I am so confused about the next step!! They basically said it’s low and deep and very near blood vessels and nerve endings so removal, although possible, would require very highly skilled surgery and will likely just return anyway.

Other options:

Medication: progesterone only pill. Just spent 20 years on the pill and hated it, acne, weight gain, etc.

Just pain relief: fine if you like taking long term nurofen but the doc said my endo is very near my kidney and I will have to have regular scans to make sure it is not affecting the kidney function because it will likely just keep growing if I do nothing.

Surgery: remove all the gubbins entirely. Don’t want kids, am 40 so still a long way till menopause. Doc warned HRT ‘might not agree with me’ so then where would I be?

I kinda just want everything removed. Am I wrong to want that?

Don’t seem to be any good options.

Heard about Body identical (yam root), transdermal oestrogen and an oral capsule called Utrogestan. Plus maybe testosterone replacement for energy. Anyone on this? Confused.com

[Tttt4444]

I am 41 and had a hysterectomy and endo surgery and stage four diagnosis and adenomyosis, and six by four centimetre cyst removal from ovary the doctor kept the ovaries within a couple months my symptoms returned and I still have my monthly period cycle when I get three week long migraines and period pelvic pain similar to before surgery but without the uterus labour contraction pains, ultrasound scan showed the cyst was back to one and half centimetres, andm I asked the doctor about removing my ovaries he explained that they r important for skin and hair health as well as bone health and hormone replacement therapy is necessary for those ( which I know my mother had complete hysterectomy at 33 with hormone replacement n calcium daily and she is dealing with osteoporosis now and a recent spontaneous fracture in her neck ☹️ She’s ok but very painful) and doctor also told me he currently has three patients who have attempted suicide trying to do hysterectomy without hrt and he does not recommend (I asked about this as I might not be a candidate for hrt)

[Tttt4444]

Oh also my hysterectomy was in March 2021

[Guineafowlrach in reply to Tttt4444]

How can you tell if you might not be a candidate for HRT? I was so hopeful about the yam root one as it’s more natural but this sounds like many people don’t get on with it. Such a mystery to me, no idea what to do. Thank you for telling your story, I hope things improve for you… xx

[Tttt4444]

Well for me the medication he has prescribed now to deal with the endo pain is called vivisenne ( I think I’d have to check) on the package insert says not to take if ur lactose intolerant or have migraines with aura which I have both but he wants me to try it anyway as he says this is the only hormone medication that is an option as any others aren’t covered by insurance and are not affordable I didn’t ask what the price is because I’ve been offered medication for the migraines that was five hundred dollars a month so I don’t question when they say they are unaffordable…..I am currently waiting to start the medication after heart tests comin up in March because I’ve been having chest pain but I’m hoping the chest pain is caused by microscopic endo on my diaphragm because I also have should tendonitis and I’ve read those can be symptoms of endo on diaphragm but my doctor checked my diaphragm during surgery so if there is endo it would be microscopic and not visible…..I don’t know anything about yam root but I thought I heard it raises estrogen? If true that would be bad for endo I’ve never researched it though

[Tttt4444]

Oh and I have to have the heart tests before trying the medication because it says not to take it if u have heart problems raises risk of heart attack and stroke of u do

[Guineafowlrach]

Eeeeekkkkk! Total minefield 😬

[Nikkky in reply to Guineafowlrach]

Hi there, did the consultant mention trying the mirena coil? This delivers progesterone right to the pelvis where it’s needed to suppress the endometriosis. It worked well for me and it was much better than the pill. There are ladies on here who have had success with it. I would get complete pain relief for about 15 months (nothing else had worked previously) and then the pain would gradually come back and I would need to get it changed. It is supposed to last 4 years but it was explained to me that it releases less and less progesterone over time and it obviously wasn’t quite enough for me. I’d definitely explore that option though. Although hysterectomy is a tempting option I wouldn’t rush into it as it doesn’t solve everything and can create more problems. If any endo is left behind it can flare up again plus a surgical menopause is no fun. I had a hysterectomy 5 years ago and to be honest it was more the aftercare that was the issue. It was non-existent and I was just left to get on with it without being offered HRT. Knowing what I know now I would have done things differently. I had no idea that doctors don’t do training in menopause and HRT and gynaecologists are not specialists in hormones (only our gynae organs). I was given incorrect advice and this is not unusual. I’ve had to figure it all out myself and I asked my g.p for HRT 6 months ago. Unfortunately the NHS can’t prescribe the higher doses of oestrogen I need and most g.p’s don’t prescribe testosterone. I’ve had to go to a private menopause specialist. You can (& must) take HRT and you are correct in the HRT you’ve already mentioned. That is the gold standard in HRT. Also, even without a uterus we do need progesterone (Utrogestan) as part of the HRT as it helps prevent any endo from flaring up again. A lot of doctors don’t know this. I’ve had to go to a private menopause specialist. If you do go for a hysterectomy I would advise you get a plan in place to start HRT immediately after surgery. Visit the Balance Menopause website as it has all of the up-to-date info you need and will help you. Sorry for this very long post!

[Guineafowlrach in reply to Nikkky]

Oh thank you so much for explaining all this, like someone has shone a light into a very dark womb … sorry, room.I tried the coil but after a very long and difficult time the doc finally got it up there. Sadly once in, it was just excruciatingly painful and after a few weeks trying to just cope I couldn’t take it anymore and they took it out.

The longer this goes on the more I am certain that I will stay private, and now you mention a menopause specialist that is also on my radar. Good call on getting it sorted to start straight away. And the bit about Utrogestran. Written it all down in my notes. Someone else mentioned the Balance website to me so I’m off there now. Thank you again xxx

[Nikkky in reply to Guineafowlrach]

Oh that’s a shame about the coil. I had mine fitted during surgery so I do wonder if it’s easier to put in that way. Definitely check out the podcasts etc on the Balance website. There’s even stuff about endo, hysterectomy and HRT. I’ve found it so informative. Just to say-I don’t regret having my hysterectomy as the surgery and recovery was fine and my pain has improved. I just wish I’d been told about surgical menopause and put on HRT. My hormones fell off a cliff and I’ve never felt so ill. The psychological symptoms were unbearable and I was completely floored. As long as you have HRT in place before your op you’ll avoid a complete crash. Replacing your essential hormones is so important as they affect the functioning of every part of your body including your brain. Make sure your consultant is pro-HRT. Also bear in mind that you might need to consult a private menopause specialist and their waiting lists can be a few months. You’ll learn a lot from the Balance website-knowledge is power! I wish you all the best x