The Role of Hormones

[JoJo45]

I was just reading Amanda's last post, referencing her blog, and mentioning that she is writing (or has written) about hormones.

I personally believe GM is either greatly affected by hormones, or may in fact be somehow tied to horomone fluctuations or imbalances.

Of course, I have no proof.  But so many of us have had exacerbation of GM symptoms during the menstrual cycle, many of us have had partial or complete relief after menopause.  The majority of women are diagnosed after a period of pregnancy(ies) and breastfeeding episodes.

Do you feel like your GM experiences had been affected by hormones - -if so, please post, in an informal information gathering exercise.

Hope everyone is healing.

Jo

[Tempeee]

Hi Jo,

Thank you so much for putting this online group together, I have been a mess lately (just had my second surgery) and I was so thankful to find this forum. Every story I’ve read has had me in tears, you all seem like great people and I hate that anyone has to go through this.

I have been battling this disease for almost 2 years and whole heartedly believe that it is due to my hormones. I was recently tested and my Estrogen levels were through the roof and my Progesterone levels were extremely low. I am seeing an Infectious Disease Specialist and she believes that the hormones are my trigger as the GM acts up every other month, a week before my period. Unfortunately I am unable to take an steroids or other medications due to clotting issues. The birth control I took caused a DVT and PE so I am more susceptible to develop another clot and there are many medications that put me more at risk.

I have not had any children and I’m 26 years old. Is there anyone on here that has this and has not had any children? Anyone have a pattern like mine? Per my IDS I do not fit the typical case and was curious.

Thank you and I hope everyone has a Merry Christmas :)

Tempe

[Red11483]

I am sure there is some connection but not sure where I know my symptoms are worse during and the week prior to a period but most women without GM experience some breast discomfort but who knows. I wish there was more research being done.

[Sky67]

Hi Jo - sorry it's been so long.
I had my firsts mirena coil fitted some years ago. I started having problems with my periods again so my new Doctors said as it only had a five year life, I should have a new one fitted. Shortly after this was done I got - wot they said, was my first 'abscess' in my right breast!
Over a period of about two years my periods got much more heavy and painful, until I couldn't put up with it anymore. I was sure I had been given 'a faulty mirena coil'!  I went to a specialist with the end result being the removal of the coil whilst having a 'thermal ablation' (an insertion of a baloon filled with boiling water, which burns away the lining of the womb). Not a nice procedure, one that was offered instead of a full hysterectomy.
Exactly one week after having this done (I was still recovering from the op), I woke in pain with a large lump in my right breast again! Then, as I am sure you all know the process of what followed. I was told again that it was probably an abscess, had various referrals and examination after examination, mammogram, ultra sound scan and finally the biopsys followed by being told to prepare myself and my l family for the worst as she was sure i had breast cancer! That's when more tests were carried out and finally after a lot of scratching of heads - I was diagnosed with GM and then later IGM. That was 2 years ago and since then I have had a lot of stress and upset in my life. I have recently started with stabbing pains in my right breast again and for a few months now my joints, especially my lower back have been so painful. I have a new Dr who has read up on my condition tho and has said that there is a link between IGM and joint pain! However, he also thinks I have started early menopause too, so I'm now thinking that my IGM may flare up?
So sorry for the long post - any comments or observations welcome xx

[barbados95]

Hi  Jo

I wanted to let you know that my IGM started 6 months after having the mirena coil put in after the birth of my daughter. The second flare up happened 1 month after having the mirena coil removed 5 years later. I believe there is a connection there with hormone fluctuation.

Julie