What you wish you knew...

I am new to the site. I am super young (19!) and have had some serious problems since I was 12. I got my first period when I was 10 1/2! Anyway...it has been a long journey, as short as it may seem. All the women on this site have made me count my blessings. However, while my doc is not telling me to get a hysterectomy right now, it has been thrown out as an option repeatedly as other treatments have not been effective. The plan is to hold out for as long as possible, but I have a question.

What do you know know that you wish you had known before. I know a lot about my condition, treatments, etc. I just want to know...from a real life perspective...from women who have been there done that or are going through it now, what do you wish you had known about at the beginning. Whether it is how you were affected or a treatment you wish you had tried first. My doc and I have had lots of coversations. Now I want to hear it from women who really know. Any advice, thoughts, or feelings would be appreciated.

Thanks Everyone. You all are amazing!

Hi Stitch!

I started my period young also ( age 9 ). but may I ask what kind of problems are you having?? This site is AWESOME!!!! I've learned quite a bit about my problem and the different types of treatment available. Keep in touch

Nicki

I basically just bleed.....alot....for a year straight at my worst.
Except when I don't bleed....ever....for 7 months once.
And then there is the cramping. I have a fairly high pain tolerance, but these hurt so badly it makes me throw up sometimes.
While I have never been diagnosed, they keep telling me that it is not really serious. All tests come back normal. They have had me try all sorts of things, but nothing has worked. I am not married and not sexually active, so I don't know about fertility yet, but from what i have heard, it is not looking good. However, I don't want to do anything permanent until I either have kids or know for sure that I can't.
So there you have it. Mostly I bleed alot, heavily and for long periods of time with lots of cramps.
Oh well. I just know what is probably coming and want to be really prepared for it. It seems the women who struggle the most are the ones who have to do it suddenly. When the first time you hear about getting a hyst is when you are 12, you have some time to think about it
Anyway just curious.

Hugs to all

Hi! I too had very painful periods.(to the point of throwing up) Not every month, about every third month. Never bleed for more than the normal time though. When I got married tried to have kids, couldnt, so did a laporoscopy and had endometriosous. Had it lasored out and had no problems getting pregnant. now 11 years later and two kids later, I just had a hyst. I had the best years being preg. and inbetween having my two kids. after 8 years no pregnancy and painful periods I decided to do it. I am recovering very slowly and right now cant really say yes it was the best or no it wasnt worth it. I had horrible cramps 3 weeks ago, (the time I would have been on my period) So bad I ended up in the ER. they found nothing wrong with me. I am waiting for next months time to see what happens. All I can say is please hang in there! Try to have kids and see if it is also better for you. Also the endo wasnt even that bad. cant say that was my real problem or not. I dont think anyone knows what the real problem is. Kinda like you. Maybe try the shot that keeps your period from not coming and wait to see what happens when you do meet someone and start a family. Best wishes to you and I hope it gets better.

What I wish I knew, and now I do.....

How long it would take me to recover from this surgery. I was in good health and good shape before the hyst and cancer diagnosis, but this hyst has knocked me on my butt. The doc told me that it would take upwards of a year to fully heal, and START to feel like myself again, and I just thought he was being conservative, as not to have me expect to much, well stupid me, I thought oh, I'll be back to my old self again in no time. It will be a year since my hyst in June, and I am finally starting to feel like my self again, but not my old self, my new and improved self.

snickers

Stitch 101,
Wow 19! I thought I was young at 34. I am sorry you are having these troubles so early on.

Personally, I decided to have a hysterectomy due to large fibroids that overtook my uterus. They became symptomatic and I needed to decided on a solution. Children obviously was the biggest question at hand, but in my scenerio it was looking pretty unlikely that they would be able to save the uterus and have it be strong enough to bear a child.

Other than that option being taken away from me, I am very happy that I had the surgery. I feel 100% better. Everyday now I feel more like myself again. I have my body back. I did not realize how much the fibroids were affecting me.

There are many options out there now and I know it is hard to decide. My advice is keeping asking questions and exploring all your options. You will know what is best for you.

Keep the faith,
Landed

Hi,
I have struggled with gyn problems for about the last 15 years, I dont know if I'd have done much differently... my doctor first wanted me to have a hysterectomy at about age 30 for fibroids, but I had Lupron injections instead, which shrunk them for a few years. I decided to try to live with them for a few years, until other problems added in the mix ( adenomyosis and HEAVY bleeding). Sorry I couldnt be of more help, I wish you luck with your situation.'

PS. you were born on the exact same day as my younger daughter, Erin.

Gosh 19 is so young to be going thru this sort of decision!

I am almost 43 years old and have been suffering problems for about 23 years now. After my second child was born, I did not have a cycle for over 18 months. They were treating me with estrogin and projestin shots as well as birth control and had preformed 2 D&C procedures. They finally decided at age 20 that I needed a hysterectomy. I suffered thru the decision for several weeks and decided to allot the surgery. Funny thing is when they cut me open for the hysterectomy, I was 3 weeks pregnant.

The doctors urged me to get an abortion because they said that if I carried my baby one or both of us would die. Well here I am 21 years later, and I have my miracle child.

After giving birth, my cycle straightened out for about 5 years, then the problems started again. I would have times between 6 months and 2 years where I did not have a cycle at all, then I would suffer 2 or 3 a month for about the same length of time. I have had all kinds of birth control pills, D&C's and even had my uturis frozen. Nothing seemed to help for very long. Then with moving around alot, and insurance changes, I went thru several doctors before I finally got a referral to a GYN. On my first appointment with him, they found several large fibroids, cysts, and a very thick grey uturin lining. The first thing he told me was that I needed the hysterectomy and at my age (43) and with the history of problems, I came home and discussed my options with my husband and together we decided to go for the total abdominal hysterectomy.

5 weeks post op, I can tell you that I am 100% satisfied with my decision! My hormones no longer rage, I don't hurt as bad as I used to, and I feel no more less a woman now than I did pre surgery.

There are no majic words to help you at your age with a life chaging decision. The best thing I can suggest, is to research your options and learn as much as you can about your diagnosis. Also I can not stress enough to get a second opinion. If you were my daughter, I would try and support you to the best of my ability with any decision that you make.

My prayers are with you,

Thanks to both of you. That actually really helps a lot. Part of me was thinking "no one my age is going through this...blah blah, poor me" But then I started to think that actually, there is almost more benefit to having the support of people with experience, people who may have put off having a hyst and/or people who did it right away. Thanks!

Stitch,

I hate the position you are in. I can empathize though. My problems started with I was 16 years old. I had very bad ovarian cysts and required a hip-to-hip cut to remove them. They told me at that time that the chances of me having a baby were very small.

I had to go on the pill after the surgery in order to 'straighten things out'. I remained on the pill for 25 years due to the problems.

Around age 37, things still got worse...hormonal migraines, periods getting heavier, etc despite the pill. At age 40, I had a stroke due to birth control pill/migraine med interaction. The really frustrating thing about that was that when things started getting bad at age 37, I asked about a hysterectomy and was told that I was 'too young'. I hadn't had children at that point and the doc knew I had wanted a baby. But, as I said, they weren't sure that I was going to be able to have one anyway. And, I wasn't in a relationship either.

Since the stroke and the recent hysterectomy, I have done a lot of research. There is a very real, very large danger to being on the pill when you suffer aura migraines (the ones with visual disturbances). There is also a high incidence of problems with bcp and migraine med interaction.

What would I have done differently? I would have absolutely insisted on a hysterectomy at age 35...the point where warnings for the pill become serious. I would have been excessively vigilant about researching the meds I was one. I would have read official websites of the organizations that related to possible medicine complications (American Stroke Assn, American Heart Assn, etc) to look for info related to my meds/symptoms (headaches, etc). Unfortunately, at the time you feel worst is when you have to work the hardest as your own advocate.

I don't know if this helps you in anyway. I know how alone I felt at age 16...and age 25...and age 30 for that matter. Just be sure to stay on top of things and be your own advocate.

Best wishes and a big