The Dr. did find endometriosis (I had it too years ago.) But, he also took lots of pictures and showed them too us of what he called a conjested pelvis.

This is actually a condition where you have varicose veins in your pelvic area. my daughter has varicose veins on her uterus.

He said this could cause a lot of pain and discomfort for her as well as the endometriosis.

My daughter says she feels like she has mild cramp all the time. On a scale of 1-10 for pain in that area, she says she almost always at a 3.

But during her monthly cycle, she has very bad cramp. She has to take vicodin just to keep it bearable for a few days every month.

Does anyone have experience with this? We see the GYN in 3 weeks.

DO you think this could be connected to lyme? I did a search on the internet for congested pelvis, and one of the sites the doctor mentioned intersticial cistitis.

My daughter also has this and we feel it's definitely lyme related. Anyway, his theory was that he thinks a congested pelvis, could be caused by some underlying disease.... Hmmmmm

Thanks for listening, It's just so hard seeing what my daughter has to endure, she's so young and had so many seriuos health issues due to this stinking disease.

It makes it doubly hard, because she got it from me... sigh.

I imagine this can't be easy for either of you, but at least she has an understanding mother like you.

I don't know about pelvic varicose veins and Lyme but I wanted you to know both you and your daughter are in my prayers.

Endometreosis by itself can be really rough .

What did the Gyn say about at least treating that aspect to give her some relief?

You said," Thanks for listening, It's just so hard seeing what my daughter has to endure, she's so young and had so many seriuos health issues due to this stinking disease."

You have all my sympathy there!

"It makes it doubly hard, because she got it from me... sigh.

Please be gentle with yourself; you sound like a great mom. Not your fault.

"I wish I could take it from her,and it was me instead."

You know, its funny...when they warned us about becoming a mom because its "so hard" we thought they meant work.

Nah... thats easy compared to loving so much, isn't it?

Keep us posted, ok?

I am so sorry your daughter is going through this pain.

I had this, had the laporoscopy and the pictures were terrible. I had the cyst on my ovaries and the dr then said it was like having hemorrhoids on my tubes and uterus.

MY WARNING TO YA'LL. I had 2 dr's tell me I needed a complete hystroctomy due to this and that I would never have kids. I was only 24 years old.

They said this was caused by "something my boyfriend (now husband) gave me" funny thing was he never "had" anything. I was the one always sick. We now know it was the lyme, I had exterme kidney problems then too.

Due to the kidney problems I was put on Cipro for a year. Dr C said that was sorta like my treatment for lyme.

It was 1 year later I got pregant for Dominic and then went on to have 2 more kids. The dr's were wrong all the way around.

There were alot of other female problems with it, I lived on vicodan too for my monthlys. It was worse pain the child birth!!!

Anything I can do to help,
Just let me know
Starr

andie-ws,
The doctor currently has her on a Lo-Ovral been on low dose birth control for about 2 1/2 years because of heavy irregular periods and painful cramping.

We've always suspected endometriosis, because I had it too.

After she heals from the surgery, he wants to put her on a medication that would keep her from getting her period for about 6 months - to "Push back" the endometriosis.

To make it as inactive as possible, then she would have to stay on birth control until she is married and decides to have children.

Your post was so touching...thank you for your care and especially your prayers, they are very welcomed.

beach4so,
AFter reading your post, it seems that you and my daughter have a lot in common.

My daughter's gyn said that it is kind of like having hemorrhoids on her uterus.

He is very conservative, and saaid that if she were in her 40's and had all the children she wanted, he would do a hysterectomy. But since she is only 18 he will not do anything that would rob her from being able to have children.

As far as your doc telling you back then that it was something your husband gave you, I think is so wrong. My daughter is still a virgin so that kind of blows that idea.

I tend to think that some how lyme is connected to this. When you wrote about your kidney problems it really caught my attention!

My daughter has a lot of trouble with bladder and kidney infections. Our LLMD actually has her on Cipro right now - she's been on it for about 2 months so far, and I think she will be taking 2 more months.

I'm so glad to hear that you were able to have children. This is something my daughter is really concerned about. She really wants children.

As for what you said about the pain - I tell her that when she has children and gives birth the labor probably won't be that bad after the pain that she deals with now.

I'm speaking with experience - I had endometriosis and the pain and cramps from that was worse than labor, I agree with you.

I found a gyn that was willing to treat me back then that didn't want to rush me into surgery.

At the time of my lyme symp. I was a fitness trainer and teaching aerobic classes. (Can't tell that now..lol)
but all that stopped when the kindey problems and "chronic fatigue" started.

Anyway she put me where I had to exercise for at least 30 mins a day walking only.

And here is the funny part, I had to lay on the floor and put my feet up on the sofa/chair and raise my pelvis in the air, almost like a back bend, and stay like that for 5 mins at a time, for a 1/2 hour, everyday.

I was so desparate to have kids so I did it and the pain did start to go away, after a month or so, she said it had to do with redirecting the bloodflow.

She told me that if I did everything she told me I would be able to have children. Exactly 1 year after seeing her and getting my treatment guidelines...it worked I found out I was pregant for Dominic.

Pregancy always helped the pain, she said it would clear it all out. Which it did because I always felt good for about a year after having a child.

My youngest is 2 1/2 and I am seeing a gyn about the same problems. Hoping to get the hysterocomy now.

I hate to think of your daughter having to experience all of this. It took years away from me and my husband. With all the female parts not working and being so inflamed, you can guess sex was impossible.

I must admit after the year on cipro my kindeys cleared up and so did most of my female problems. But it didn't all get better until after the first child was born that was when I knew what real periods were suspose to be like.

As for my kindeys one day they were working the next they were hymerogering. I could go 2 or 3 weeks no problems then start urinating blood just that quick.

They never did figure that out but of course in my records it has alot of duck talk and yes again my husband is to blame.

Will keep you and your daughter in my prayers no one should feel this kind of pain at such a young age.

I'm so sorry to hear that your daughter is having so many problems at such a young age.

I too have had many "female" problems which now I believe were a result of undiagnosed and untreated lyme.

I had irregular hormones, ovarian cysts, no periods, and now two a month. I need to see a gyno to find out what is going on. I'm 37 and I'm not sure if I can have children but I would have to be healthy before I would try.

It is good that your daughter can get this taken care of early on and that her gyno didn't do anything aggressive.

I believe that once the lyme is gone these problems will most likely clear up or at least improve a lot.

I also had bladder surgery for polyps and then was later told that is was an
unnesessary procedure and that I had interstistial cystitis.

Before I found my LLMD I was always confused about why I had so many different health problems.

She is really lucky to have you there to support her through this and you seem like a wonderful mom. I am lucky to have a great mother also which is so important.

Best wishes to both of you.

quote:

---

Originally posted by ArtnSoul:

The doctor currently has her on a Lo-Ovral been on low dose birth control for about 2 1/2 years because of heavy irregular periods and painful cramping.

After she heals from the surgery, he wants to put her on a medication that would keep her from getting her period for about 6 months - to "Push back" the endometriosis.

To make it as inactive as possible, then she would have to stay on birth control until she is married and decides to have children.

He is very conservative, and saaid that if she were in her 40's and had all the children she wanted, he would do a hysterectomy. But since she is only 18 he will not do anything that would rob her from being able to have children.

---

Hi ArtnSoul,

So sorry to hear that your daughter is dealing with so many painful health problems.

I have been dealing with endometriosis since my first period, I am sure, but it took 20 years before it was diagnosed. I have done a lot of research on endo and am in contact with a lot women that also have endo and associated problems. I have a website with a forum for Endometriosis, if your daughter (or yourself) is interested. You may email me for info, if you like.

Just as everyone here knows how important it is to seek out a LLMD, it is no less important when dealing with endometriosis - can't stress that enough!! Retaining fertility is a very big reason, as you have mentioned.

Was your daughter's surgery only diagnostic in nature? No endo removed?

You and she need to read up on the drug her doctor is advising she go on after surgery. I am sure it is one of the GnRH drugs, usually Lupron, in the US. This drug should never be taken without knowing the risks involved - weighing the benefits against the risks. The list is VERY heavily weighted to the risk/little benefit side.

One of the most important things to know about the GnRH drugs is that due to permanent side effects that can occur (bone loss) it is not recommended for more than 6 months use in a LIFETIME. SO, even if this drug might help someone during that time (which it often does not and can even increase pain and discomfort from side effects), any POSITIVE effects do not last - THEN WHAT - other treatment is still needed.

One is trading a 'possible' few months of some relief for possible long term permanent side effects, such as bone loss. Memory loss may occur, along with a multitude of short term and/or long term side effects.

The EXPERT endo physicians consider aggressive conservative surgical excision of the disease the most effective means of eradicating the endo lesions, thus bringing the most symptom relief and the best chance at preserving fertility.

This type of surgery requires a very skilled eye and trained surgeon in removing endo. Endo lesions can present in many different colors and appearances, it can be very hard to see and recognize, it can be embedded in adhesions, along with the cysts and lesions and adhesions that can easily be seen. It takes a very skilled and trained endo surgeon to provide the best results.

You mentioned that your daughter is on oral contraceptives. This can afford some good pain control and possibly help to slow down the endo, but it does not work for all women. Different pills may need to be tried and different ways of taking it. A monophasic pill is recommended for endo (one that delivers the same hormone dose in every pill, unlike the tri-phasics with different hormone amounts in different pills taken at different times during the cycle, etc).

For many women with endo, the Pill is most effective when taken on continuous dosing. This means that your daughter would not take a 7 day pill break every 3 weeks, but would take active pills only (no sugar/inactive pills) for at least 3-4 months or more at a time to suppress her having a period for longer stretches of time. This can be very beneficial and MUCH safer (if she has no contraindications to taking the pill) and much better tolerated than the GnRH drugs with 6 month limited use.

Personally, my choice was to take CBCP (continous birth control pills), which is what worked quite well for me, inspite of the extensive amount of endo I have had. 3 weeks on, 1 week off did not help me. I would have opted for surgery again WITH an endo expert surgeon this time around, but with my other health problems, did not feel I was a good surgery candidate. It also meant traveling a long distance for the surgery and with my fatigue and muscle problems (fibromyalgia and myofascial pain syndrome), bad lower back, etc, which I was unable to do. I went the route of CBCP. I am now in menopause and my endo situation is doing better.

I had several large cysts (endometriomas) on my remaining ovary discovered 6 years ago. They should have come out - but for the reasons stated above, I was on CBCP for the past 6 years (very few breaks to bleed) and monitoring of the cysts. My gyn did not think I could hold out - but I have made it - it wasn't always easy, that's for sure. He was the first to High Five me when my ultrasound a year ago showed the cysts reducing in size!! His comment, "patience paid off!" HOWEVER, this is not a recommendation for that approach to dealing with endo, it was what I felt I had to do in my specific situation. It has been a gamble, but much is with endo. I am not out of the woods yet, dealing with some new issues and now since stopping the pill in March and entering menopause - we are entering a new phase to see how I will do. Unfortunately, at the ultrasound I had done this month, I have added another cyst back, but the 2 I have are both small, thankfully. I hope they stay that way and better yet, disappear.

One other thing I wanted to add about Lupron and the bone loss issue. When Lupron is used on young women, one also needs to consider that, depending on their age, they may still be putting on bone growth, so how detrimental might this be to take Lupron at that time?!

Lupron throws a woman into a menopausal state and the side effects can be very difficul - and for what - it is only a bandaid for a short period of time, one which may leave her with more problems on top of the ones she already has. Once the Lupron is stopped, the disease is quickly worsening, because it was not removed, only 'shrunk down' some (again, providing it even helped).

I also want to state that I am giving you my opinion on it here as my personal opinion on the drug, so that you will do your own research into it and you and your daughter make your own choice as to what YOU both feel is best. On my endo forum, our purpose is to share our experiences and NOT JUDGE what treatment choices each woman makes. Every woman is different in what may help her and what she feels is the best for her or what she feels she must try. We are there for support in her treatment choices and in any way needed.

I would like to give you a link to a site that I feel has excellent information on the disease and treatment. Dr. A at this site would be my choice for a surgeon, but there are others around the country. He is my personal choice from all I have heard about him from his patients.

I might be able to help you with a doctor recommendation in your area (don't know where you are from).

Almost forgot, as far as pelvic congestion - yes I know what that is. I know of others with endo that have it as well.

Well, this has gotten very long, but I hope it can be helpful. Again, my best to you and your daughter. My heart goes out to both of you.

Sue

Here is the link to the site with accurate endo info: http://www.centerforendo.com/
You will probably want to start with Basic Q&A Especially note what Dr. A has to say about GnRH drugs, like Lupron.

Edited this to add that I now see you are from PA. There is Dr. R that you might consider, IF you would like to find a doc with expertise in endo. Here is link to his site: http://www.adlap.com/reich.asp
Here is a page on that site about surgery: http://www.adlap.com/endoExcision.htm
You can explore the site, lots of info there too. I have not read through it lately, so can't comment on my thoughts about it at this time, but wanted to give you the link so that you can read it if interested.

Thank you so much for your informative post.
I'm definitely going to chek out the links and sites that you provided.

Just at the moment, I'm dealing with my herx cycle, along with killer cramp and migraine headache.

I have about a week every month that is horrible - when I can concentrate and think straight I will check out the info that you provided.

My daughter and I will check it out BEFORE her appointment at the GYN.
Thanks again

I havent had those particular problems but i started having pain in my ovaries when i was 10 (4 years before my ovaries were in use)

(i should mention that 10 is when my lyme symptoms started)

my cycle was always irregular but since dec 03 the only way i get a cycle is medicine.

also I have pain in my ovaries (ny whole pelvic area used to hurt but ive been on pain med for lyme symptoms so i think that is y i only feel pain in my ovaries now)
every time i have an ultrasound they say nothing is wrong.

same with the lumps in my breast... one lump hurts (not bad just annoying ) but they said they dont see any lumps it must be something with my gland....

while i'm not sure if lyme can cause your daughter's particular problem but i know it can mess with the reproductive process....

i dont know if it gets in the organs or just messess with hormones. but i believe alot of the pain i have had in reproductive organs is from the lyme.

And please try not to guilt yourself to much...

You didn't give it to her intentionally ... and your getting her help now... this makes you a good mom... just remember that

I started taking mag seppliments several years ago for brain fog and upped the amount taken too many small doses after Marnie wrote about needing lots of mag when sick with lyme. Along with the brain fog going so has all the irregularity, pain and PMS I had when I was very sick with lyme.

It took several months before I noticed the improvement.

quote:

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Originally posted by ArtnSoul:

DO you think this could be connected to lyme? I did a search on the internet for congested pelvis, and one of the sites the doctor mentioned intersticial cistitis.

---

I had this too. Don't really remember the term, congested pelvis....but do remember the dr saying something about varicose veins there.

I also had fibroid tumors and endometriosis. Interestingly [or not] I also have Interstitial Cystitis. LOTS of pain.

I'll email you the link to my story. I'm sure it will sound familiar to you and your daughter. I KNOW all my troubles were due to Lyme and only Lyme.

Hope you find a good solution to all this. I was 39 when I had my hysterectomy, so I didn't have decisions to make about children.