Suffering with chronic pain

Hi Emily, thanks for your reply. I have been back to my gyno and he is sure it is endo and adeno even though the biopsy is negative - he may just not have hit the right spot. The pain is severe and he was great in acknowledging that. I am now looking at have 6 months of injections which put you in a menopause state to see if that helps. If anyone has any advice, info, or suggestions re these injections, please let me know.

Hi. I have a similar situation to you in that I have PCOS and Endometriosis as well. Are the injections you are talking about called Zoladex and go into your abdomen? If they are I have had these as well and they really helped with the pain. I'm not 100% sure it was from the injections though as I also had a Mirena put in at the same time as commencing the Zoladex injections. My recommendation with them is to make sure you are exercising and eating healthy, I put on some weight but again am unsure whether it was from the Mirena or the Zoladex. I had the Mirena in for 6 years (they last 5 years each) and only had it removed when we began trying to concieve. I had no problems (other than the weight gain) from the injections and Mirena and had minimal to no pain once the Zoladex stopped (Mirena was still in).

I hope this helps! Feel free to ask any questions though!

Hi Kylie,

Sorry I haven't responded to you but thanks for your email.

I tried the Zoladex injections - I had 2 of the 6 so only lasted 2 months.

The endo pain went, with only a little tingle every now and then, but I got the uncommon side effect of athralgia which is joint pain. It got that bad that I couldn't get out of bed and could barely walk. However its been over 2 months since my last injection and I still have joint pain and am taking strong pain killers to be able to work and function. They are now thinking I may have endo in the bowel.

I still have the Mirena in but it doesn't seem to have stopped the pain, so I have hit the jackpot - endo and joint pain!

Anyway, how are you going?

And is there any other treatments which you have tried which assisted you?

Thanks

Kylie,



This might be a long shot but have you ever tried any alternative therapies such as Accupuncture (for the pain)? IAfter several months of debilitating pain that stopped me from working/exercising etc. in the very early stages of my diagnosis (and whilst waiting for a surgery date!!) I finally tried Accupuncture and whilst my situation was no where near as involved as yours I strongly and happily reccommend it to any ladies with endo. If you are uncertain, feel free to do some of your own independant research on the subject, but I know my specialist gynocologist and the Endometriosis Care Centre of Australia (in Melbourne) work closely with chinese medicine consultants and acupuncturists.



Just a thought…



Amelia

Hi Amelia,

I have actually started back with Chinese Herbs and Acupunture again, and have noticed some relief but the Chinese Herbalist has told me it can take 6-12 months.
Thanks for your suggestion.

Adenomyosis can rarely, if ever, be diagnosed definitively with anything other than biopsying a complete hysterectomy. It is nearly impossible to diagnosis with, even mulitiple, biopsies as the doctor would be blindly stabbing parts of the uterus not knowing which where adenomyosis might be found.  Ultrasound, and other scans, at best might indicate that the uterus is an usual shape or has a thickened wall which may indicate some signs of adenomyosis but, again, can not provide a clear diagnosis.
If you're working in education in women's health, its important that you have a better understanding of this.  We know that chronic pain is debilitating as we put up with it every day, what we need is correct information.