Not sure where to go from here..

Half_Tempted · 01-05-2009, 08:02 PM

Hi!

First off I'd like to comment on how loving and supportive of a community you all have developed here. It's great to see people come together to try to help those in need. Ultimately I think it helps not only the person who is in need, but the helper too, deal with these feminine struggles.

I included my short version of my story first because I'm a bit long winded at times & I don't want to bore everyone.

I just wanted to ask a few questions...

-Have any of you experienced infections in your uterus due to Endo or PCOS? Including

- If you have pain due to endo, does your lower stomach, around your uterus, swell or get bloated? Is it retaining water?

- Have any of you had surgery? Did you develop Endo again? In the same spot or in a different location?

- When you were diagnosed with Endo what type of doctor did you go to to seek treatment? An Endocrinologist? A Gyno? Or a Fertility Specialist?

- If so, did the same symptoms come back? And what did you do about it?

- Are any of your tubes, ovaries or uterus deformed due to Endo?

My long story:

I found this site through a friend who is experiencing PCOS with me. It's been a long journey for both of us. Now I'm looking for some feedback from others to try to deal with my own troubles. Well, troubles isn't the right word, I don't think, maybe complications is a better word.

When I played field hockey in school I had these sharp pains in my right, lower abdominal region. After seeing the doctor he told me that there was "menstrual cramps" I let the issue drop until 2007 when I started experiencing the pains over again partly due to my new running routine.

At first I thought something was wrong with my appendix since the pain was only progressively getting worse and would eventually get to the point where I couldn't stand more than a half hour to an hour without being in immense pain. When I finally got to the doctor he thought I was experiencing an Eptopic pregnancy or I had a cyst on my ovary. Thankfully I was not pregnant, but my period stopped for 2 months after, then I would get my period every other week, then it would stop again for a few months. From 10 to 20 years of age I never had a problem with my period being irregular. You could set a watch by when it came! I was also suffering from anxiety. Perhaps due partly to the pain I was experiencing, but more dirrectly on a physical level. I would be sitting at work reading a history novel & my heart would start racing like I'd just ran a mile. Now History does get me hot and bothered sometimes, but never to that extent!

That's when my doctor sent me to my gynocologist. He diagnosed me with PCOS and put me on Yaz and a perscription to help with my irregular hair growth. Yaz drove me up a wall! It got to the point where I couldn't finish a full day of work without bursting into tears about something. I was also getting the pains in the same location, but even worse. I ended up quitting my job because I couldn't do the lifting it required because of the pain. I ended up in the emergency room with severe pain from an infection. Has anyone else experienced this?

My Gyno took me off Yaz shortly after the infection and ran some more tests which included ultrasounds. This time it came back that I had only one symptom, the dark body hair, of PCOS. So, he said I was misdiagnoised.

When nothing else seemed to work my Gyno sent me to a Fertility specialist who was also an Endocrinologist. This is when I went through a series of rigious tests to see exactly what was going on with my body.

The Fertility Specialist came to the conclusion I most likely had Endo and PCOS, but Endo was the culprit behind my pain. I told him I didn't want to opt for birth control because of what happend with Yaz, so he didn't medicate me at all, but I would have to go through surgery to see if I really did have Endo.

Not only did I have Endo, I had a third ovary too! Just what every woman wants. It doesn't cause any medical issues, but I love telling people about it! According to the surgeon he cleared up a few spots and didn't see any other spots that may cause me pain. After healing completely I saw an almost immediate effect! It was wonderful! I had no pain and my anxiety seemed to be at bay as well. Though during the surgery he discovered my left ovary had been blocked in the tube and was crippling inwards towards my uterus. Only a few months before he couldn't find this during an ultra sound.

When I went to see the Fertility Specialist after the surgery he wanted to lay out a post opt plan to try to keep the Endo from coming back or keep it under control. This is when he diagnosed me with Hypoglycemia due to the PCOS and put me on Metformin. He also put me on a medication that would help with my hair growth, similiar to what my Gyno put me on.

Since then he's only wanted to treat me for those two symptoms. He actually told me once that all the anxiety I was experiencing was in my head. Which could have been the issue, but I believe if it was it would be pain related stress I was experiencing. So, I'm not sure what to do and where to go. Do I go to another Endocrinologist or a Fertility specialist or a specialized gyno? I'm so confused and fustrated that I need some guidance.

Thank you all for listening and lending an ear.

Happy Holidays,
Jamie

ms_tara · 01-05-2009, 09:53 PM

Welcome Jamie!

I read your post and some if it does sound familiar. I too had really bad side effects with Yaz. It turned me into a crazy person about a week after I started it. It's like all the joy was sucked out of my life. Whew, glad I got off that.

I also recently had surgery and immediately got relief. Good luck to you! I'll answer your questions....

-Have any of you experienced infections in your uterus due to Endo or PCOS?

The only type of infections that I've had have been yeast infections.

- If you have pain due to endo, does your lower stomach, around your uterus, swell or get bloated? Is it retaining water?

Yes! During my last outbreak with that horrible pain, I noticed that I was bloated in my lower abdomen. It was noticibly worse than regular bloating due to PMS.

- Have any of you had surgery? Did you develop Endo again? In the same spot or in a different location?

I had the surgery in December 2008, so it's too soon to tell if it will return...

- When you were diagnosed with Endo what type of doctor did you go to to seek treatment? An Endocrinologist? A Gyno? Or a Fertility Specialist?

I went to my OBGYN. I have read that RE's are the best to perform endo surgery, but I really trust my OBGYN and I let her do it for me.

- If so, did the same symptoms come back? And what did you do about it?

So far, so good. My symptoms are gone. AF came a few days after surgery and it was PAINLESS. What a relief!

- Are any of your tubes, ovaries or uterus deformed due to Endo?

No, I had a HSG at the same time and everything looked great.

DiamondInTheRough · 01-05-2009, 10:09 PM

Jamie - If you are experiencing the bloating in the lower abdomen, it can be from many things - not necessarily the endo. I have had the bloating for a long time, and after food journaling, I've realized that my body doesn't do well with gluten/dairy. I've recently been cutting these out of my diet, and I have felt better in that respect. Although I am still experiencing pain from suspected endo in my pelvic area and lower back. I think I could have colo-rectal endo, I see my GYNO next month to talk about things (she has me on consequetive bcp and so far it hasn't done anything for my pain).

I think you are on the right track being on Metformin and an anti-androgen. You sound like you are a physically active person as well, which is a good treatment in and of itself.

If you really think the endo is back, you should look into having another lap, and at least discussing some medical options like Lupron.

Best wishes

OliviaLeigh · 01-08-2009, 11:54 AM

Hi, I thought I would add in to your questions

-Have any of you experienced infections in your uterus due to Endo or PCOS?

I have not had any infections. Although I do run fevers a lot and have inflammation problems, but that does not necessarily mean it is related to Endo.

- If you have pain due to endo, does your lower stomach, around your uterus, swell or get bloated? Is it retaining water?

I retain water very easily. I notice days where I am in a lot of pain I am bloated. However I've discovered this is b/c of the way my body deals with pain. When I'm in a lot of pain my body kind of goes into "anxiety" mode. I develop a fever, get anxious and in turn I swell. I have had panic attacks and oddly during and after one, my abdomen can swell very large. Odd, huh?

- Have any of you had surgery? Did you develop Endo again? In the same spot or in a different location?

I have had lap surgery. But only once, so I can't really answer your question here. All my endo could not be removed as it is inbedded in one of my ligaments of my uterus (that part is known). I did not want any damage done to my uterus (no babies yet), so they had to leave it alone.

- When you were diagnosed with Endo what type of doctor did you go to to seek treatment? An Endocrinologist? A Gyno? Or a Fertility Specialist?

I have seen so many dr's. Honestly, the best dr is the one that cares the most for you and puts your quality of life first. I found this in my gyn.

- If so, did the same symptoms come back? And what did you do about it?

Since all my Endo was not removed, I have had to have treatment since the surgery to control the growth. I tried BCP (Yaz included) and hated all of them. Like you, I was crazy on them. I also bled right through them and had NO pain relief.

- Are any of your tubes, ovaries or uterus deformed due to Endo?

One of the ligaments of my uterus is greatly disfigured. I wish a dr years ago had been more aggressive in finding the endo. I am now on Lupron to try to get pain relief from the Endo that is still in there so hopefully I can start trying for a baby again. I am also on Lupron so the Endo does not continue to grow when we start trying so we can halt the damage that is being done.

Big Hugs

cemomster · 01-08-2009, 04:35 PM

Here are my answers to the questions pertinent to me.

- Have any of you had surgery? Did you develop Endo again? In the same spot or in a different location?I have had 2 lap surgeries. One in Sept. of 1997, and then in April of 2001, 2 yrs after having my DS.
I had endo in one of the same spots the second time. He was not sure if it was scar tissue left or if it was new endo.

- When you were diagnosed with Endo what type of doctor did you go to to seek treatment? An Endocrinologist? A Gyno? Or a Fertility Specialist? I went to a gyno at first, and she dismissed me as being a wimp. 2 years went by and I was away at school. My now DH demanded I go to the clinic up there because my pain was not normal and he was worried. They actually sent me to a specialist gyno at the same office as the first gyno. (I actually had to see another dr there to see if the specialist was needed, within 5 min. of talking he said I needed to see this specialist. HE said he was never so sure of anyone before needing to see him.)

- If so, did the same symptoms come back? And what did you do about it?
Thats why I am here. I think after 8 years my symptoms are coming back.