stage 4 endo and adenomyosis

[AmuP]

hi everyone! I’m new to this group and am in need of desperate advice please.

I have stage 4 endometriosis and adenomyosis, due to my heart problems I am unable to take any pill except cerazette. However, cerazette worsens my EDS symptoms and causes me all sorts of other issues so I stopped taking it recently. The doctors are sceptical about doing surgery on me for 3 reasons, 1 being that I have chocolate cysts on both ovaries and they are worried about damaging the ovarian reserve by removing them (I’m only 23). The 2nd issue being worries about anaesthesia and infections in regards to my heart problems. And the third being that they said the endo will grow back but they don’t want to keep doing surgeries as this may affect my other issues.

I’m in severe pain 24/7 even when I’m not on my period and I just don’t know what to do anymore. I cry all the time coz of the pain and frustration and the pain meds don’t work. I’m even looking into paying to see someone who does homeopathy to see if that can help as I’m so desperate.

Does anyone have advice on anything that works for their pain?

Thank you x

[GM07]

have you got any homeopathic stuff and what’s the results for that… kindly share with us

[AmuP in reply to GM07]

I do not, I’m looking into going to see them but I haven’t yet. I was hoping someone on this group may already know of stuff that has helped them

[Lucie44]

I'm so sorry to hear you're going through. Maybe its worth trying to ask for a referral to the endometriosis specialist centre in the womens centre at London UCLH. They accept referrals from all over the country. I have adenomyosis and stage 4 endo but im 45. When I was your age i had endo but was on the pill (dianette) for my hormonal skin already so think that helped for a while. Id say if you can ask them to swap your pill if possible rsther than not having anything. Have you tried the mini pill? Also look at an anti inflammatory diet if you haven't already and dont have any caffiene (although you prob dont with your cardiac issues) as caffiene can increase estrogen levels. I also found soy products flared by endo over the years. Maybe take fish oil as this is said to be natural anti inflammatory and natural steroid. If you're on blood thinners for your heart, you'd need to check with cardiologist/gp first as fish oil thins the blood. Im currently trying serrapeptase tablets to try and dissolve a 5cm fibroid as im on a long waiting list for gynae after gp sent me for scan as i was bleeding mid-cycle for months and gynae are difficult to see since the pandemic. Maybe you could look at serrapeptase too (its also a blood thinner though). Best of luck to you. I really hope you get some help soon. Lucie xx

[AmuP in reply to Lucie44]

hey thanks for the reply! The mini pill cerazette is the only one I can take with my heart problems but seems to make the other issues worse I’m vegetarian so I’ve looked into getting these vegan omega 3 capsules instead of the fish ones so I’m hoping that helps! I also have peppermint oil that I rub on my abdomen area but I might look at the capsules so thanks so much for the advice! Good luck to you too

[Lucie44]

I forgot to say I use peppermint oil capsules to relieve bowel endo pain. Its not a miracle but it does help a bit. I also rub ibuprofen gel on my pelvic area to try and reduce inflammation that way in addition to the trusty old heated wheat bag. Gentle yoga and walking (i make myself do this when in pain) do seem to help a bit. My friend swears by ice packs for her endo pain but this doesn't work for me personally (only helps with my headache really) but may be worth a go for you as we are all different. X

[EmB18]

I found a combination of nutritional therapy and homeopathy worked really well in reducing my pain and other endo symptoms.

[AmuP in reply to EmB18]

thank you for the reply!

[IB15]

Hi,

I'm sorry to hear you are going through this, I also have stage 4 endo and adenomyosis so understand some of your frustrations and pain.

Has anyone offered you the coil? Just wondering if that could be a good alternative to Cerelle to try and halt your cycle to give your body a little relief from the symptoms? I have been told it can take 6 months or so to really kick in but many people swear by it.

Or maybe tranexamic and mefenamic acid, they help with heavy bleeding and inflammation! It might be worth asking gyny or a GP about them as an option?

Natural remedies I have found help a little bit, taking: Iron, B12, Magnesium and zinc seem to make a bit of a difference. Especially Iron and B12, if your levels are "within normal" but low sometimes you can feel grotty and tired so I think taking the supplements do make a difference. There is a magnesium spray that you can apply at night which helps with sleep and pain (Sleep helps everything!)

Turmeric, Rosemary, almonds and ginger are all really good for inflammation and anything with antioxidants (Like blueberries) are meant to help a bit.

Evening Primrose oil is meant to fabulous for regulating hormones as well, but can't be taken with the pill I don't think, but is great for PMS. If you suffer with Bowel issues (IBS) Deflatine (By Rennie) has really helped me more than anything else. (Of course check with a GP if you can take any of these first!)

Other than that, it's the same as you hear everywhere, when you feel up to it try and get out for a little walk or do a bit of stretching. Distraction is key for me to stop me getting down, you're going through a lot and it is very hard so do anything and everything to help relieve your stress, just try and do things that bring you a bit of joy everyday.

Sincerely hope you find some relief and things that work for you x