Treatment Options??

[Cats1311]

Due to other underlying medical conditions & disabilities I am unable to go on any hormonal medication (oestrogen or progesterone). I can't take NSAIDS. I've had scans etc and had laparoscopy surgery for the endo but ablation not excision due to other medical conditions. I am in more pain than ever now with no sign of relief. It's affecting my whole life and career and I'm not sure what other treatment options are available? I was going to ask for GRH analogues but unsure due to only allowed on them for 6 months plus menopause side effects. Any help would be appreciated!

Thanks!

For reference I'm 27.

[Endosufferer1]

Did you try noni juice?

[Cats1311 in reply to Endosufferer1]

unable to due to kidney & BP issues.

[Endosufferer1 in reply to Cats1311]

Then, if nothing works. I'd try methylene bleue since endo behaves like cancer (you just need to respect the dosage). My friend with ovarian cancer (endo first) takes that and she has no issues.

[Marcia71]

if you struggle with hormones I don’t think gnrh injections are for you as they initially cause an oestrogen surge before ovaries shut down. They really messed with my hormones and gave me a lot of hormonal migraines. Of course we all react differently to these things so it maybe worth a try.

[atealdeer]

As Marcia71 said, the first hormone surge you get after starting GnRHa treatment is really tough. I also have a low dose of HRT alongside it, though many don't bother at first. This kept me on an even keel and kept my bones from thinning, which means I've been allowed to continue this treatment and am now on my 18th monthly injection. We are told it's for six months only but many people are allowed to continue with it. Just to point out, the amount of HRT in given is so low, much lower than your natural hormones, so worth checking whether you can take it?

You don't say what your other conditions are so I'm going to say somethings that might not be relevant to you and I'm sorry if it feels like a waste of time to read. I was scared of any hormonal treatment because I'd had such terrible mental health from any hormone treatment in the past. My poor quality of life from endo pain and associated issues meant that I finally just went for it. Unfortunately, my specific treatment can cause an increase in blood glucose and I have diabetes and have been negatively affected by this. However, the increase in my quality of life since starting the GnRHa injections means that my diabetes nurse has been very supportive with tweaking my meds to deal with all this and supports me continuing with the treatment while it benefits me. It's all a big balancing act, or just choosing one not great thing over another. It often feels like you're stuck between a rock and a hard place. And getting joined up care is almost impossible!

It sounds like you're in a really tough spot and I'm so sorry, and sorry that I don't have anything more useful to say to you. The GnRHa has been positively life changing for me. Also, you say you cannot use NSAIDs and they are such an important part of my pain management that I cannot imagine being without them. I had a bad reaction to opiates years ago and had resisted them until shortly before my injections started and they were so helpful. Do you get codeine or tramadol or the like from your GP? How are you/they managing your pain?

[Cats1311 in reply to atealdeer]

thank you so much for your reply I really appreciate the time! I have a bunch of issues that always impact different medications and like you said joint up care helps, I wish more doctors would look at the overall picture instead of one healthcare issue!

Unfortunately due to history of blood clots and family breast cancer and risk of bleeding and my connective tissue disorder I can’t use any hormonal medicine! I also can’t use NSAIDS due to my asthma and bowel issues as well as blood pressure issues and neuropathy issues.

I manage my pain with Cocodamol but I hate taking it due to nasty side effects and only slightly eases the pain! I was on tramadol for a few years after both my knee operations and the doctors never liked it so I came off those and I couldn’t drive whilst on them which driving is one thing that keeps me independent!

It’s very hard to manage all my other disabilities and now endometriosis due to all the medications overlapping and endo being hormonal! I’m hoping the GNRH injections help relieve pain but I am worried as I already have hot flushes (not known why!) so if they get worse then god help me! What we have to go through aye

I’m glad to see you’re able to manage with your medications 🙂 xx

[atealdeer in reply to Cats1311]

You really are a difficult spot with this, I'm so sorry. I really hope the GnRHa injections work for you. I know this is probably your best bet at this point, but you need to know that your first month will probably be more painful than the state you're in now. Not everyone is told this and is often shocked and scared. A specialist warned me, so I was very prepared. I am wishing you the very best and I really hope you get some relief soon.