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New with questions New with questions

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  #1  
Unread 07-03-2005, 01:20 PM
New with questions

Hi,

Well, here is my deal...I have know I had fibroids and endometriosis for almost 5 years now (first surgery Nov. 2000). In general, I don't have a lot of pain and didn't do much for the endo for about 3 years. Then the prickly pain got annoying enough that I didn't want that constant reminder that I had endo. I started on OrthoEvra. For about 6 months it seemed to help, but then I started bleeding mid-cycle and my GYN said that wasn't the bcp for me. I switched to provera. After about 6 months on 10mg/day, I started bleeding mid-cycle again, so she upped it to 12.5mg/day. Well that helped for another 5 or 6 months (and all this time the prickly pain is gone), but then I started bleeding for 3 weeks at a time. By now, I've also moved so I found a new GYN who doesn't think much about provera. I had seen an endo specialist prior to moving who thought to be effective, I'd have to be on 20 mg/day. Well, my new GYN says, you've only had one "bad" month (3 week bleed), lets see how it goes and call if its a problem. Of course the next 2 months are "normal". Well, that got me to about 3 weeks ago. Started my period, everything is normal...cramps aren't bad, bleeding isn't too bad. But it didn't stop after a week, and as I was a few days into the second week, one morning while assembling a picknick table with my boyfriend, I started bleeding very heavily. For four hours I had to change my tampon every 20 minutes. Then it stopped, and the following day I didn't bleed at all until I was almost ready to go to bed.

Then all hell broke loose and I was back to the every 20 minute thing all night. I saw my doc the next morning, but of course by then all I am is anemic and the bleeding had stopped (or at least slowed down). I then only had to change the pad every 2 hours until the next morning, when it went back to every half hour or so.

Needless to say, I ended up in the ER, and had an emergency D&C when my doc got done with his regular day.

I am now on Lupron for 6 months while my body heals/gets over the anemia, then I will have decisions to make. Either do nothing and see how it goes, have uterine artery embolization (which sounds scary and I'd have to go to another doc for), have a laparotomy in which he'd remove my endo and fibroids, or just have the hysterectomy. My doc says if I were 42 instead of 32, it would be a no-brainer. I've got significant endo adhesions (including to the bowel) and we all know the endo and fibroids could come back. I'm leaning toward a hysterectomy, but am nervous about that as well.

Thanks for listening,
Katy
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  #2  
Unread 07-03-2005, 10:32 PM
New with questions

Katy,

Hello to you!

I am rather new to the endo scene so I can't offer any tidbits. Wanted to say hi though.

I too am currently considering and now actually leaning towards a hyst. I am actually glad to know that my discomfort/pain/bowel problems/back pain actually have a name attached. In the past I have heard salpingitis, appendicitis, mittelschmirtz, nerve entrapment, scar tissue, MS, ALS, fibroma... The topper was when I heard "its normal for a woman your age who has had as many children as you..." I was 31, 32 at the time and had two boys! I learned not to complain. But I have new docs now!

This board isn't as active as some of the others. Sometimes you have to wait for a response. But I do suggest reading back through the older posts. This site has very good resources. Look for the link at the top of the page.

Good luck to you,

Dee
  #3  
Unread 07-04-2005, 02:51 PM
New with questions

Hi to you both!

As an ex-endo sufferer, I feel for you two! I know the pain and unhappiness it can cause. I've gone through many treatments and tried so many options, I do understand how frustrating it can be. The Lupron can be a blessing and a curse, in my opinion. I did 2 series of injections ~ each series lasting 6 months for a total of 12 shots. I also had to take Add Back therapy (Norithindrone) to fight the bone loss and menopause effects of Lupron. Laporoscopy, Hysteroscopy and D & C procedure done twice. I have 2 friends that had great success with Lupron. Unfortunately, it didn't work too well for me. But there are a few more options out there and not all DR's will mention them. Research, research research. That's the best advice I can give. I spent about 2 years researching and found out a lot of things about endo that the DR didn't tell me. Like our own hormones are what's feeding the endo. Estrogen is the culprit. Estrogen feeds endo ~ kinda like miracle grow for your plants. Because nothing else worked for me, I had my hyst 6 days ago. But that doesn't mean my problems are over. I still have to keep an eye on it and can't take HRT with estrogen for at least 6 months. So whatever route you two decide to take, be sure to talk to your DR, listen to everything they say and ASK QUESTIONS! I hope this helps at least a little. If you have any questions, feel free to pm or email me.
Best wishes to you both.
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  #4  
Unread 07-04-2005, 04:52 PM
New with questions

Hi All, I am also an endo sufferer. I have had symptoms for most of my life and was just diagnosed in March of this year. I also have pelvic congestive syndrome, the embolization was also recommended for the PCS. I am not real sure I am comfortable with it. (They use it to treat the vericose veins on the uteris and overies- PCS.) Like Katy and Dee I am leaning towards the hyst. but at 45 I am still nervous about the total menopause thing. I know I am perimenopause now, hot flashes and night sweats. However they are better since I started on natural progesterone cream. I wish there ws an easier way. I can't take the pill because I used to get migraines with it. I do not want to take Lupron. Heard too many bad things about it. It seems to work great for my cousin she has been on for 6 mos. this time, but has not had a bone scan and does not take calcium, magnesium or vit. D. She is just 39 and I worry about the bone loss, I have read it is really accelerated on the drug. I recently (2 wks. now) had 2 lymph nodes removed (groin) only 3" incision but still painful, so I am not ready for the big surgery. ouch. Yet I can't take this level of pain for two weeks a month. I think if men got endo there would be a cure.LOL Good luck and gentle hugs to all of you. At least we know we are not alone. Bev
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