Hi all
8 weeks ago I had a hysterectomy for extreme progesterone intolerance. This was not a decision I took lightly as it is a major operation. However, for the last 11 years I have systematically worked my way through every progesterone available on the NHS, as well as trying a couple of private options. Each and every time I stuck with it for the recommended time advised: I tried the mirena coil for 6 months, everything else for 3 months including tibolone. Despite this it never got any better for me.
The symptoms I suffered on prog include: weight gain, bloating, joint and muscle pains, itchy skin, eczema in my hairline (i’d never had eczema in my life before), sore bladder and headaches, but most debilitating of all were the mood swings. When the time came around each month to take whichever one I was on at the time I would fear for my marriage. The prog literally changed my personality. When I finished taking it the withdrawal was just as bad if not worse - literally like drug withdrawal. Then slowly I would return to my old self - until next time. I couldn’t tolerate it continuously either, believe me I tried. I took a fortnight off work and managed to get to 12 days on utrogestan, by this point I was so spaced out and confused I fell off my bike on a fast road and nearly killed myself! Never again.
The second time I consulted privately the meno doctor I saw was particularly helpful and she explained to me that about 10-20% of women are affected with EPI as badly as me. It is not surprising really. I was never able to tolerate the contraceptive pill (including the pop) and suffered a bout of postnatal depression (which cleared up on its own after 6 months) after my first baby. I did not suffer with PND with my 3 subsequent pregnancies, and have no mental health issues. My problem was hormonal sensitivity.
What to do then. The bleeds in my late 50’s were becoming tiresome enough as well as making me anaemic, but I just couldn’t carry on any longer with the mood swings - my body was sending me a message.
So, I had my hysterectomy by laparoscopy, as I have said just 8 weeks ago. Unfortunately for me I did have a complication which resulted in me having to have a second surgery 3 days later. Having said that once that was sorted I have not looked back. To say I am overjoyed to be off the progesterone roller coaster is an understatement. Every day since I have felt the same: calm, relaxed, happy. Once the complication was sorted I found the recovery easy. I have 4 very small scars, 2 of which are very low down and all of which I think will hardly show in a year’s time. It’s a small price to pay for feeling well.
I did not have any disease before my hysterectomy: no fibroids, polyps, adenomyosis, hyperplasia (despite being on minimal vaginal prog for a long time) or anything else. However, prog intolerance is such a debilitating illness I feel it merited my op in its own right. Unfortunately, however, it is unlikely this will ever be offered on the NHS to many that need it due to the cost issues. I have also been met with lack of understanding from a few people I have explained why I have had it; it is as if they could understand physical disease but cannot grasp anything else.
All that said, I feel as though it is the beginning of the rest of my life, and I wanted to share my experiences with anyone here that it might help.
Much love to you all x