Adenomyosis Warriors...advice sought from a new adeno club member

[nempenthe79]

Hi all!

I am new to this community as just two weeks ago I was diagnosed with adenomyosis after years of pain and being sent in circles by doctors. Guess I am a new member to the adeno club.

The specialist said I need a hysterectomy and talked of IVF. I'm 43 no kids.

I don't want a hysterectomy and am trying a natural approach via diet, stress management etc.

Has anyone tried this and what recommendations can you give? I have started some reading about adenomyosis and health tips. I have adjusted my diet. No gluten/wheat, sugar, dairy, meat . Still getting pain but it's early days.

It's been so much to take in. I came out shocked from the consultation.

Thank you for being here. I am British and live in France. My French is terrible so I am unable to speak or join local groups. Just to have this community is a lucky gift and I thank you

Best wishes

[bluebug]

The Endometriosis UK has info on adenomyosis if you look on their website The main treatments are clotting tablets ( tranexamic acid), pain killers (mefenamic acid), hormonal e.g. mini-pill or Mirena coil or surgical e.g. ablation, hysterectomy.

In regards to diet, exercise etc you can try it and go to extreme lengths, but unless you are so obese that your fat cells are producing oestrogen then it's unlikely to be much help.

[Goiaba]

I’m sorry you had to hear the bad news. I have very aggressive adeno and endo and to be honest I don’t know when the symptoms of one stop and the others start. I have tried the natural approach for a good while, anti-inflammatory low fodmap diet together with exercising. It did help me at the beginning but I slowly got worse again as my adeno progressed and endo kept reoccurring. The restrictive diet was unsustainable for my routine so I stopped. I am currently on the waiting list to have a full hysterectomy and while that doesn’t happen I’m on Prostap + HRT. Even though I’m too young for all that (I’m 29), it was the best combination of treatment I’ve ever had. I’m super well, little to no pain for months now, only occasional flare ups here and there and even so very manageable. Although I don’t follow the restrictive diet I do have a relatively healthy routine, eat real food, avoid gluten and exercise 3x week. The natural approach did help, but unfortunately it wasn’t enough for me.

[slinky00]

Hi I am 41 and also have adenomyosis, only found out once embarking on wanting to have a baby and hitting a lot of hurdles.

I am very much into natural therapies and have found that I have had significant changes in my symptoms with systemic enzymes such as serrapeptase. It has reduced the severe back, stomach and hips pains which are with me all through the month and heighten during ovulation and during my period. I have found relief with acupuncture and visceral treatments. However, it doesn't completely relieve me of the pain and discomfort. During my fertility journey I had my adenomyosis completely suppressed with 6 months of zoladex injections (literally shutting down my ovaries). I have also heard some talk about having small surgery to have blood supply cut off - the same as they do with Thyroids but I myself have not looked into this much and do not think they have many cases where it has made huge improvements as yet.

I am still on my journey but if there is anything else that I pick up along the way I will let you know.

[EmB18]

Stress management is such a big one for endo as having the condition can be so stressful, but stress can definitely aggravate symptoms too. We are all different in terms of food triggers but I found wheat, sugar, caffeine and alcohol were big ones for me and taking them out made a big difference to my symptoms along with adding in lots of anti-inflammatory foods like fruit and vegetables.