Lichen Schlerosus

Body: 

Hi in 2005 I had a hysterectomy and I also had my ovaries removed. I've been on Elest solo HRT since. In 2013 I have began getting vulval sores and was diagnosed Lichen Schlerosus. I used Clobetasol cream which improved things a lot but never completely cleared it. The LS caused vulval adhesions which were operated on in Oct 18. The adhesions are now back only 6 months later. I've been given Nerisone and Estrogen cream and the NHS can't see me for 3 months. I'm panicking because following a urethral stricture in 2017, I have to use a female catheter once a week to keep the urethra open but with the adhesions, it's getting difficult to insert the catheter. I feel lost, invisible and fed up with our National Health Service and frustrated at every turn because everything I try doesn't help and I also feel that the Gynae consultants are out if their depth. I don't know anyone else with this problem which is why I've joined this Forum. Anyone else have this? Thanks.

I'm sorry MamaJ but I don't think there is anyone on this forum with the experiences you describe, and certainly not the qualifications to help you find an answer. You may want to book a consult with Christine herself, since she is a nurse and will have some insights into the conditions you are describing. Being an American, I don't know much about how the NHS works, but if you need a catheter to pee and you can't insert the catheter, doesn't that qualify as an emergency? Or are you still able to manage? - Surviving

Hi MamaJ

I’m sorry to hear of your troubles.

I would not be surprised if the supplemental estradiol is causing such extreme derangement of these tissues. The lower genitourinary tract - vulva, lower 1/3 of vagina, urethra and base of bladder - are “exquisitely” (a term I once saw used to describe this) sensitive to estradiol. Estradiol is an anabolic steroid, which means it causes tissues to hypertrophy or build up. I have spoken with many women over the years in whom HRT caused severe lower urinary tract symptoms.

You don’t state your age, but I can’t imagine the HRT is doing you any good at this point, and may be putting you at significant risk. Hormone receptors change at menopause, with an “up-regulation” or increase in estrogen beta receptors - the natural ligand, or key, for which are phytoestrogens. It would be interesting to know whether discontinuing the estradiol in favor of red clover tea would halt or possibly even reverse the strictures. Nothing is going to prevent genitourinary atrophy, as estradiol is the only steroid hormone that builds up vulva and vaginal tissues.

The “sores” however, can most likely be addressed by restoring a healthy vaginal microbiome. If you type “honey” into the search box here, you will pull up a great deal of info on the subject.

Wishing you well,

Christine

…and just to be clear, our dear Surviving, my 4-year nursing degree taught me a lot about medications, how to place IVs, feeding tubes, and catheters, but gave me zero tools or information that could remotely help with the conditions I now address with the WW work.