welcome hugs to ya...

Kayla: I don't think I know you so I want to welcome you to CP
a few people have pelvic pain hopefully you'll get a answer, never heard of that issue so I don't blame you for being confused.

I really hope this group is a good fix for you and we can somehow help, one thing we all know well here sadly is pain.

on how to get your day to day life back, start with the little things.
set a small goal or maybe a to do list but be flexible with it, allow a learning curve and extra kindness for yourself if you don't reach your goal that day and just try again. also make sure to find times for things you enjoy

welcome again
tori

hi Kayla,

Welcome to the group. My name is Mary Ellen and I'm sorry you're dealing with this kind of pain at your age that you have to be here to begin with. I've never heard of this, but did the drs. say anything could be done or have you done any research on this yourself?

I have polysystic ovarian syndrome and couldn't have children, had cysts on ovaries a lot, painful, but because i also had other issues, like a bad back, that pain kind of took over. I do understand the grit it and go which i did for a while, but eventually, that wears thin.

As I said, I would definitely do my own research to see what, if anything could be done. I'm glad your boyfriend is very supportive as that's so important when you're suffering. I do hope you can find a dr. or a treatment that can help you with this issue as you're way too young, and i hate to see you start suffering now.

I'm sorry I couldn'tbe any help, but I'm sure you'll find some wonderful supportive people on here. I wish you the best of luck and hope and pray something can be done.

Again, welcome to our group.

Hugs,

((((((((((())))))))))))

Mary Ellen

hello kayla welcome its nice to have you...this is a nice group of people here (((hugs)))

Thank you all for replying. They are going to try putting my on Lupron pretty soon, but it will be about a month before we will know if it will do anything for me. The only other real option for me after that it to have the veins closed with surgery.

The procedure does have a larger amount of risk though, so my doc wants to avoid it if we can. He wants to refer me to a pain management doc... I am not very familiar with that branch of medicine though.

I have done some research and found that not too many doctors treat this. There is no specific specialist I can see, and this condition mostly presents in older women who have children.

Its just hard to deal with, my mom is not being supportive at all. I find it funny bc she has chronic pain as well. She pretty much said that it would be 'better for me overall' for me to just 'have the doctors do a hysterectomy and get over it.' I refuse to consider that an option at this point. I may be letting this beat me up right now, but I will not let it take away my chance of a family.

Sorry for the rant, it is just disappointing that my own mother can't understand that I want a family of my own one day. Thank you for the welcome :)

There is another procedure for PCS, an Embolization, have you talked to your Dr. about that? It's a Radiological method of treatment, where they go in and plug the vessels so that they can't become engorged with blood anymore. All Varicose veins are is where the blood the valves don't work correctly so blood flows both ways and pools in the veins, enlarging and stretching them. It doesn't require surgery, it doesn't require general anesthesia, you have to stay overnight in the hospital, but it's not quite as radical as having your uterus removed...the varicose veins can return on other parts of you abdomen, like your pelvis and lower groin.

You might want to at least discuss an Embolization with your Dr. and see if that would be a 1rst step, see if it works...if it did that would be great, no surgery.

Has your Dr. completely ruled out Fibroids and Uterine Prolapse? It's really, really rare to have PCS with never having been pregnant, unless you've taken large quantities of Estrogen over a long period of time...

Take care,

Kat

Kayla,

You can rant here any time...that's why we're here sometimes you just have to let it out. At 22, I don't blame you about not wanting to have hysterectomy!

i hope they're able to help or at least alleviate the pain.

hugs,

(((((((()))))))

Mary Ellen

Hi and welcome.

I am sorry that you are having these issues and the pain.

I know the Lupron is great for Endometreitis but have no information of its use for veins.

I agree 22 is too young for hysterectomy. Kat has a great idea. I would see where that goes.

Best wishes. Hugs-RJ

Hi Kayla, Welcome I'm so glad you joined us but sorry your here for the reasons you are. We all share the same common denominator here and that's pain. Are you seeing a regular Obgyn or an Obgyn specialist? If your not with a specialist I would definetly see one before doing anything. My cousin was on Lupron and if I'm not mistaken that drug basically puts you in menopause for how ever long your on it. The goal with it is to stop the hormones in hopes of helping your condition. I can see using this for endometriosis or polycystic conditions but for your condition it doesn't make sense. Kat gave you some great suggestion I would definetly check into it. Also as others have said do as much research as possible on your own it sucks that we as patients have to do the Drs job but you must be your own well informed advocate. I am so sorry you are in so much pain I truly hope it eases. I'm glad you have the support if your biyfriend. I really hope you mom comes around. I think sometimes they just hurt so for their kids and anger/frustration is just sadness and fear turned inside out. We are all here for you. Vent away we've got your back! I'm sending up prayers for healing, patience, strength and answers.

Hugs & God Bless
Lisa

I agree with Kat on the Embolization. I was going to ask you if they had looked into that. It's non surgical, radiological. Might be worth looking into if you already haven't.

hugs,

Mary Ellen

Welcome Kayla, I hope you get it sorted and can get back on track again, hugs Susie x

hi kayla,

i just want to say hello and welcome. although sorry for the pain that brought you here, i am glad you found this group as we all did - you have come to a good place.

try to be gentle with yourself,

elizabeth

To answer a few questions. They have ruled out a lot of other possible issues, endo, infection, ect. When they did the surgery they could see several large veins on the surface of the uterus. I have asked about having the veins embolized, but they would like to try meds first to see if they will go away on their own.

Yes, the lupron will put me into temp. menopause which I am not looking forward to. My doc says that the hope is with less need of normal function will be less blood flow. With less blood flow will allow the veins to shrink. We have no idea if it will work, but its worth a try.

With me only being 2.5 weeks out of my surgery we are kinda trying to avoid any other procedure for a little while.

I have been going to a reproductive endocrinologist lately, he is the one currently treating me. My ob/gyn said that there was nothing wrong with me (even after I showed him the CT results which said I had vericose veins.) So I went for a second opinion.

The medicine has to be mailed out, which can take a week or more. I guess in the meantime I'll just take It easy and use my naproxen.

Well it sounds like your in the hands of a good Dr., that is the normal progression, meds, then Embolization, then Surgery would the last absolute step if nothing else helped....

I'm sorry that your having to deal with the pain with nothing for pain. I hope that one of these treatments helps you before anything radical has to be done.

Kat

Hi Kayla, and welcome. Has your obgyn told you what effects, if any, your PCS would have during pregnancy? Might be good to know. And has he told you the chances of infertility from taking lupron? Also good to know.

Gentle hugs dear. I hope everything works out well for you.