Monthly cycle and LS

Women's health
1

I'm starting to wonder whether the monthly flares some of us have mentioned here aren't really simply the return to symptoms after an ovulation-related mini-remission. I've decided to begin charting my symptoms to see.

Only twice in this year since my diagnosis have I noticed a pronounced clearing-up of the white patch accompanied by the lubrication, slight swelling and feelings of arousal that go with ovulation (even well past menopause, as I am). But now I'm wondering whether I just didn't notice it ten other times.

I'm thinking this partly because someone here said pregnancy is accompanied by hormones that suppress rejection of foreign tissue – in other words, suppress the mechanism that's gone into overdrive and caused LS.

So I wonder if there isn't a spurt of the same hormones mid-cycle.

2

I think, Morell, that this is a very complicated topic.  Hormones ... how much does the medical world know this far?  And I'm not a doctor ... what do I know. 

I have tried this estrogin and progesterone combo, and which is probably coming from the same thought. ( I use very little of it at present.  Earlier version was premarin, which drove me nuts.) 

Research needs to be done.  I know that in the Netherlands there is some research happening.  Very beginning stages.  It is, partially, funded by an LS Society.  We need interested scientists in this matter.  Perhaps we may give answers to some of the questions these researchers have.

It is obvious that the mainstream medical world has very little to work with at present.  Hence probably the poor guidance of most of LS patients.  That's where I started feeling so alone. 

But then again, there was a posting of the positive result of a stem cell treatment, done in Italy.  Not for everyone yet.  The expense! 

Perhaps the most important role of our group on this website is the creating of awareness.  So many illnesses, for which there is no cure either, are openly  talked about.  Why not this one?

Some days I can express freely what I'm struggling with.  Other days I'm just plain scared.  One never knows how people may "set you aside" as a person.  How does society talk about hormonal problems anyway?!  Or the inability to perform sexually, for that matter.

There is another item that needs to be addressed:  scientists have started to work not necessarily for the common good, but rather for the gain of patents.  Money has made that progress, if it would be there,  goes behind closed doors.  Which may then result in us not being able to reach the people who could help us, or who could work with and alongside us/the patient.  Which then, as I suspect, results in these 'half gains', solutions that make money but give little cure. 

If only we could find access to a research team that would be willing to work with us .....without putting the patient at risk.    

  

3

Aren't you suppose to have stopped ovulating when you are in menopause? I know we still appear to have a cycle after menopause but I didn't think we actually ovulated - hence no risk of pregnancy.

I agree that it is all obviously connected to hormones as there is a remission in pregnancy that some report which seems to suppress the auto immune response we all suffer. Maybe we could all ask this question of our gynae's or dermatologists. It may get them thinking in the right direction. Wouldn't it be lovely if going on the pill again, (which I believe works by making the body think it is pregnant, so it doesn't get pregnant) could stop the progression of Ls.

Has anybody out there got Ls but is on the pill? If so are there times when you are more affected by it?

4

We don't pop eggs, but to some extent I guess we still produce a reduced amount of the hormones. I used the estrogen cream (vaginally) I was prescribed on diagnosis for a short while, maybe two months. It felt like I was on the pill, not a good feeling – depression, cramping... That was supposed to act locally to strengthen and soften the vulvar skin, but clearly it was acting systemically. My gynae was OK with me stopping it.

5

Raising awareness is a big step. Especially among sufferers! Just the other day I brought it up with a good friend. She's been seeing dosctors for years without an LS diagnosis. Sure sounds to me like she has it, in fact she's had it for almost twenty years. She'd never heard of it.

I told another friend who's trying to use diet and supplements instead of blood pressure meds. She was quite open to hearing something yucky.

I think we can leak it gradually this way. It's tricky to talk about it without telling people you're not able to have sex. That's nobody's business.

6

Hi Chrissy,

One of the questions the research team in the Netherlands is asking:  What are the long term affects of the use of the pill? As it also seems to stop the full development of the sexual organs in young women.  What are the consequences of that? 

Did all people on this forum at one time use the pill?  Is that of interest to the researchers?

 

7

In relation to LS, maybe that would relate to the post-menopausal group, but little girls who get it and have it their whole life, not sure how that would relate. I went on the pill at age 19 for about five years.

8

I started at age 16 or 17.  Had a medical reason already then. It helped ease the pain with my periods.  Hereditary thing. 

Come to think of it - isn't LS hereditary as well?  And could that be caused by the same deficiency?

9

All I have is questions.

 

10

Questions are good. It is better to get answers, but first you need to ask the question.

I was on the pill at 16 for about 4 years. Came off it to get pregnant at 20. Wasn't successful until 15 years later. Ls started when I was very young about 10 or 11 I think. Diagnosed in 50s. Also suffered horrendous periods as teenager and throughout adult life. The only remission was during my one and only full term pregnancy and for about 2 years after giving birth. Had endometriosis diagnosed at time of Hysterectomy at 50 years, when I had been telling GP's all my life that I thought I had it. No treatment ever offered.

Sometimes it is good to moan.......

11

We could call the study 'Pandora's Box'!

My mother doesn't have it. My sister says she doesn't, but I was sure she told me twenty years ago that she had the perineum tear, which would happen during aerobics workouts we were both doing. She waited too long to see a doctor about what she thought was psoriasis on her vulva and turned out to be squamous cell carcinoma. She had quite a big piece of one side of her labia removed. Fine ever since, but I'm surprised she says she doesn't have LS.

I bet there's some sort of marker for it, but whether medical researchers will look for it is another thing.

12

Here's a fun antidote to moaning (which I do plenty of!) to note how far medicine has come. The film Hysteria. I won't spoil it by saying anything about it... lots of fun, but historically factual.

13

I started the pill at age 18 took it for 9 years.  Had no symtoms of LS until after my second child and had my tubes tied.  No one in my family has it. Thought perhaps my mother had it under breasts but the symptoms didnt fit. ( just irritation and rash)    

14

I started the pill at age 18 took it for 9 years.  Had no symtoms of LS until after my second child and had my tubes tied.  No one in my family has it. Thought perhaps my mother had it under breasts but the symptoms didnt fit. ( just irritation and rash)    

15

Chrisy,

Very similar walk I made.  Endometrioses as well.  (and what causes that?)  Relieve during pregnancy and a little while after that.  Hysterectomy at age 42.  I keep wondering - are there links to LS somehow?  Would one thing lead to another?  If this - then that? 

16

Sha,

I have irritation under breasts as well.  Didn't think it was related to LS, but perhaps it is.

17

now you're asking....very interesting!

18

Dr. Goldstein says it seems to be hereditary.

19

Hi will look that one up thanks.

20

Interesting.  I wonder how many other LS sufferers also had/have endometriosis.