New Member with a few questions

Hello, my name is Alex and I’m 20 years old. I was diagnosed with endo last week. Well, it’s not an official diagnosis because I have not had a laparoscopy to prove it. My mother had endometriosis and went undiagnosed for about 10 years. It literally almost killed her and by the time they found it her only option was to have her uterus chiseled out of her in pieces. Because I was around for all of this I knew that
I had a pretty good chance of developing the disease, so this past year when my periods became much more painful than usual and where accompanied with pain peeing and constipation I had a pretty good idea what was going on.
The Dr. I talked to last week works at my school clinic and she seemed very rushed so I still have a lot of questions…here are a few.

  1. The Dr. that I went to works at my school clinic but I want to find a regular Dr. to go to. I was wondering if I should go to an OB-GYN or if there is some other type of Dr. that would be more helpful?

  2. I am in a committed long term relationship, the only reason we are not married is because we are waiting for me to finish school, and we know we want children. Is waiting a few years going to effect our ability to conceive, or is sooner better?

  3. If the pain is manageable with meds should I still have a
    Lap sometime in the near future or just wait and see if I have trouble getting pregnant before I go under the knife?

The opinions of all of you who have been here before are greatly
appreciated.

Thanks - Alex

Hi Alex~

My name is Anjie & I’m 31 years old. I’ve had endometriosis since I was 14 & have had 2 laparoscopies. I had my first surgery in Nov. 2004 & the second just recently on Sept. 2nd. Even though I have had 2 surgeries, I’ve felt better after each one. I recovered very quickly from the 2nd one and am already back on track. Now, on to your questions…

  1. An OB/GYN is the best Dr. suited for your situation. Really, endo is not a reproductive disease, but rather a blood disease. Unfortunately, it attacks the closest organ, which in this case is your uterus, fallopian tubes, ovaries, etc. Since you have not had a lap, there is always a possibility that something else could be causing your pain & an OB/GYN would also be best suited in that case. My first surgery was done by a regular OB/GYN & she managed to remove or “laser” off 80% of the endo that was present.

If you are lucky, and yes, it will take some luck, you can find a specialist. I live in California & happen to have Kaiser Permanente for insurance. I went in for ovary pain (concerned about a possible cyst) and the Dr. refered me to an OB who was a specialist in Endo. She was the one that completed the 2nd surgery & removed the remaining 20% that was left.

2)This question is a little trickier, so I will give it to you like one Dr. gave it to me years ago: “If you are going to have just 1 child, have it before you are 30. But if you are planning on having a large family, get started now.” I was about 23 when I was given that advice and was married at the time. I started trying to concieve at 25 for the next 3 years to no avail. Eventually we got divorced (when I was 29) so there could have been some “alternative” forces at work - only god knows. I guess the bottom line would be “don’t wait”!

3)“If the pain is manageable”… for me drugs worked only partially. But some women have much better reactions to medications. A good Dr. will not want you to have a period at all. In order to do that, that entails taking continuous birth control (no sugar pills). That never worked for me, but does for some women. Also, when I do have menses (which I haven’t had one yet since my surgery [yay!]), I usually have to take a prescription strength anti-inflammatory like Meloxicam (ibuprofen-based) or a super strong one I used to take was Toradol. They tend to not want to prescribe the latter though, as it can be tough on the kidneys & you can’t take it for more than 3 days at a time. Lastly, I also need the occasional vicoden, but have to take a double-strength dose as I have built a tolerance to the low-dose stuff. So, if you rather not deal with the surgery, those are some medication options, but you will likely notice a big difference & feel better if you go through with a laparoscopy. The biggest improvement for me pain wise was not only in my periods, but in my sex life as well.

I hope I’ve answered your questions well enough. I wouldn’t be surprised if I created some new ones, so feel free to ask me anything. Someone thought I was a nurse today because I knew so much about the disease. I say, knowledge is power & is the only way you will have a chance to beat this disease.

Hope you feel better soon!
Anjie

Hi,

I have endo. I had a partial hyst 4 yrs ago but I already have 2 children. I had my first Lupron shot last month. No menopause symptoms yet.

The only thing I have to add to your post is that you asked whether or not you should have a lap done.

My vote would be yes and I would specifically request that the doctor remove as much endo as possible during the lap procedure and here’s why I say that.

The more endo you remove, the less pain you will be in and the better chances of conceiving are. I know you’re not planning on conceiving today, but better to remove as much endo as you can rather than wait until it’s an overgrown jungle.

A really good ob-gyn will be able to help you make those decisions.

Good luck to you and if there’s anything I can help with, let me know.