checking in

September 26, 2004

Thanks ,

My vent and a general meltdown yesterday afternoon helped relieve the tension a good deal. If the hurricanes all cooperate, I'll be able to go to Florida weekend after next and see the close friends I have there who have been with me through the challenges of the last couple of years. That will be a welcome treat. I haven't wanted to lean on them the last few weeks as they have had their hands full with storm preparations, survival and recovery. It will also help with I have my things here; it is all just stuff but it is stuff that adds comfort and diversion to life.

I am sorry you are struggling physically and emotionally now too. While the root conditions may be different it sounds like we are struggling with the same sorts of feelings. I hope things improve for you soon too.

Shirley

Checking in

Hi everyone,

I hope you are having a good first weekend of autumn (it is my

favorite season). The weather here in NC has been wonderful this week.

Mostly wanted to check in to say I am alive and still here in the

shadows even though I have been very quiet the last week and half.

The doctor's appointment on the 14th left me feeling very defeated and

I needed to retreat into myself for a while. The short version of the

appointment outcome is that I am dealing with a change in hormone

treatment strategy to see what effect that has on the pain. This means

a few weeks of a weird combination of some pregnancy like and some

menopause like symptoms. After my body has time to adjust, I'll

figure out what to try next.

Other than that, classes are keeping me busy. I am still essentially

out of a suitcase but hope to go retrieve my belongings from Florida

in two weeks; assuming the hurricane gods don't destroy the stuff and

cooperate in terms of travel plans.

A long grumpy update and vent are below. I debated whether or not to

delete them as they are both grumpy and whiney.

Shirley

Long Update:

I left the appointment on the 14th feeling unheard, rather hopeless

and very much like I had wasted $200. The bottom line of the

appoitnment was being told that with endo there are no easy answers

(no news there). The doctor laid out things we could try and said

"tell me what you want to do and I'll do it." In his opinion the

treatment developed by the last doctor was making matters worse not

better. That meant my options were: stop the hormone treatment I had

been follwing and see where things are after my body resets itself;

start Lupron for six months to a year(has serious side effects and

only a temporary solution in the best of cases); have another

laparoscopy to vaporize the implants they can and clean up adhesions

(another temporary fix at best and that might create even more

problems, to really be effective the endo would need to be excised but

only a few doctors in the country use that procedure. I have had two

laps in the last 18 months); plan a hysterectomy which might or might

not offer substantial relief.

What I want is someone to help me develop a plan for dealing with the

pain and fatigue so that my life is about more than struggling to

exist. My experience with gynecologists is that they want to focus on

short term bandaids to the problem. I know there is no cure for endo

but there have to be ways to minimize its symptoms and/or cope with

the symptoms better.

Anyway, I opted to take the most reversible and least dramatic option

(my usual strategy when I am unsure what decision to make). I stopped

taking the aygestin and started taking some more herbs and vitamins.

Now it is a matter of waiting for my hormone levels to settle down and

see what happens and how bad things are without the aygestin. I was

warned several times that the next few weeks may be unpleasant.

In the meantime, I am going to try even harder to control the pain and

fatigue through diet and nutrition. I will also try to find some

complimentary treatment options (e.g., accupuncture, herbalism) to

help. If things don't improve by late winter, I am going to seriously

consider a hysterectomy as soon as classes end in May. Even if I

wanted to have it sooner I couldn't because of the amount of recovery

time needed.

For the record, no one here has made me feel the way that is behind

this vent. This group has been wonderfully supportive. The vent is

about general attitudes no one and no group in particular. It is

mostly just a way of getting this out of my system:

I wish the public and the medical profession took endometriosis more

seriously. It is true that it is very seldom life threatening but

that doesn't make the effect it can have on the lives of some people

any milder. It is most likely to be treated as a problem when it

causes infertility. Given my life situation I can't even remotely say

that it is doing that. For me it doesn't even cause uncontrollable

bleeding. For me it is about pain and fatigue the things you can't

measure objectively; things that don't show up on lab tests or x-rays.

That means that to many doctors they are things that don't matter. It

matters to me because it has affected every aspect of my life personal

and professional. It has cost me friends and my research career (or

at least put it at serious risk). I see myself more negatively

because of the things I don't do as well and the things I can't do at

all now. It has taken the last hopes I had for motherhood away. Yet

to many people endometriosis will never mean anything more than "oh

you have PMS and bad cramps" and the fact that it affects by mood and

behaviors is weakness and whining on my part not a real problem.

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September 26, 2004

Don't ever feel like you are a whiner!

It does tend to make one feel horrid when doctors and those close to you just blow off your symptoms like they were nothing.I am going through the same thing right now.They may just be symptoms to them but to me they rule my every day life.

Hang in there and feel free to write whatever is on your mind.I know everyone here is always willing to listen and offer support.

-- Checking in