Hi community,
After coming off the progesterone only pill in May 2020 to try to fall pregnant, my periods came back extremely lightly (barely nothing) in August 2020 and continued like this. I went to the GP and after some blood tests found that I had elevated prolactin and low progesterone, suspected not to be ovulating.
After repeated blood tests, I was referred to an endocrinologist and a MRI scan showed that I have a large pituitary tumour (macroadenoma) in the pituitary gland. This is putting pressure onto the prolactin (the hormone that produces milk for breastfeeding) nerve making it excrete higher levels so my body is not producing proper periods and unable to conceive. It is not the prolactin that is large so cannot be treated with drugs.
I have been referred to a neurosurgeon who recommends to operate and remove the tumour as it is pushing against my optic chiasm and can cause problems with sight, though my visual field tests are currently normal.
The MRI report suggests the adenoma has been there for a long time as the bone structure has formed around it. I think the elevated prolactin could explain why I have always had light and sometimes inconsistent periods. I also had abnormally large breasts ever since I hit puberty, I am a 32FF cup with a Size 6/8 frame, 163cm/ 50kg natural weight and no genetics would suggest that it was inherited from my family, it was always an unexplained 'gift' that gave me a LOT of shoulder pain.
It could also be the unexplained reason to why I suffered a pulmonary embolism blood clot in 2010 - doctors suggested at the time that it was caused by the combined pill Yasmin as I was only 22 yrs old, healthy weight, healthy lifestyle.
I consulted a fertility consultant as I wanted to harvest eggs pre neurosurgery incase I become hormone deficient in fertility hormones and keen to freeze embryos ready for IVF once I have recovered from the surgery. However, the fertility consultant said that it would be safer to first have the pituitary surgery as the hormones could make the tumour bigger and cause bleeding within it.
I am worried about everything to be honest, but in particular the possible hormone deficiency if they remove good hormones whilst taking out the tumour. How this could effect my fertility and even with the support of IVF hormones, after 10 weeks having to rely on the placenta only to carry a baby full term.
Keen to know if anyone has had any experience of having pituitary macro adenoma tumour surgery in order to conceive and how this effected your hormones, etc? Going on to IVF?
There is of course the other risk of blood clotting from increased oestrogen given during IVF and clotting after delivery. I am requesting thrombophilia to measure how prone to blood clots due to increased oestrogen.
IVF clinics that we are talking to are CRGH and ARMC, both in London - any comments on these?
Thank you!