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Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back? Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

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  #1  
Unread 10-23-2006, 09:44 PM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive

Help! I had a total hysterectomy in April 2005 at the age of 37. I had stage four endometriosis, fibroids and andeometriosis (sp?). I was unable to have children of my own and given that I had been dealing with pain for 23 years of my life, a hysterectomy sounded like a great solution.

I had the surgery and did not go on HRT at first. After a couple months without, I began to have hot flashes and felt my body literally whithering away. My ob gyn put my on Premarin, but almost immediately I began to have abdominal pain and severe bloating. I stayed on Premarin for approx. 2 months and then switched to Estrogel. I still had problems with pain and bloating. To make matters worse, I was diagnosed with Thyroiditis around this same time. Basically, my thyroid gland went completely hay-wire for no apparent reason. Spooky stuff.

After the Thyroid roller coaster ride, I switched to a different ob gyn that specializes in bio-identical HRT. He put me on a combination of Estrogen, Testosterone and Progesterone in drop form. This seemed to help my skin feel better, but I still had no sex drive and was experiencing pain during sex and during urination...frequent urination too. My ob gyn tweeked my drops and added more testosterone and ketoprophin in cream form. This did not do anything more than make my arm and facial hair grow...really freaked me out. Also, I believe my endometriosis is back as I am experiencing abdominal pain, bloating and some bouts of diarhea. So, what does one do? Go without HRT or deal with endometriosis. Sort of a catch 22.

I have felt like a total hypochondriac since I had my surgery. My symptoms include: abdominal pain, bloating, painful intercourse, no sex drive whatsoever, burning sensation during urination, frequent urination, feeling nausea w/no apparent cause, leg pain & joint stiffness, etc. My husband of 9 years is very frustrated with me and this has really had a negative impact on our relationship. I just do not know what to do.

My ob gyn seems mildly concerned. The endocrinologist that I ended up going to for the thyroid thing could care less and our family doctor just sort of shakes his head when he sees me coming as I have gone to him complaining of urinary tract infections when no infection exists.

I am almost 100% certain that my Endo is returning with a vengance. My insides feel like they're on fire...buring, aching, etc. I have pain/buring during urination and I have back and leg aches. I also have zero sex drive as sex is now associated with extreme pain for me. I also deal with bouts of severe diarhea. What should I do. End the HRT abruptly or try to wean myself off? I am afraid of not being on anything as I am only 38, but I do not want to suffer through Endo again. Will the Endo symptoms gradually go away without HRT? I am kicking myself for having a TAH when other options may have been available.

Help. I would really appreciate feedback from others that have been through this.
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  #2  
Unread 10-24-2006, 07:36 PM
I have Endo and I am on HRT - Endo is returning...

Help needed. I had a TAH 1.5 years ago. I was began HRT 1 year ago and I am almost 100% certain that my Endo is returning with a vengance. My insides feel like they're on fire...buring, aching, etc. I have pain/buring during urination and I have back and leg aches. I also have zero sex drive as sex is now associated with extreme pain for me. I also deal with bouts of severe diarhea. What should I do. End the HRT abruptly or try to wean myself off? I am afraid of not being on anything as I am only 38, but I do not want to suffer through Endo again. Will the Endo symptoms gradually go away without HRT? I am kicking myself for having a TAH when other options may have been available.
  #3  
Unread 10-26-2006, 07:54 PM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

My doctor has had me take a combination of Femara and a progestin called Megace to try to shrink the Endo that came back after my hyst where I kept my ovaries. Although it seems to have helped with the pain a lot, I am having issues with hair loss on my head and excess growth on my face. He has never seen this with anyone else he has put on this treatment and I also have some other things (like Celiac and PCOS), so it could be that you would be able to try these drugs. Of course, he tells me that the Endo will grow back again after I go off the drugs and then I'd have to take them again to shrink it again. I'm not sure that will be a good option for me due to the hair problems, but I see him in 2 weeks to talk about it. Good luck with everything. I'm sorry you have to go through this, too.

Lisa
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  #4  
Unread 10-26-2006, 08:24 PM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

Thank you for sharing. I am on testoterone & progesterone (to offset the estrogen) and I am dealing with hair growth...facial, arms, stomach, etc. Yikes! I feel like an ape. I could be losing hair on my head, but I have super thick hair so it's not currently noticeable. Still scary though. I have to go in for bloodwork tomorrow and then back to the ob gyn in 2-1/2 weeks. I plan to run all of the above mentioned past him then. In hindsight, I wish I would have foregone the TAH. Life was easier then. : - (
  #5  
Unread 10-27-2006, 04:36 AM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

I think the hair issues have been one of the hardest things for me. I already had issues with that due to the PCOS and messed up hormones and the one thing I said to the doctor before I started the treatment was that I already had all these hair problems and I didn't want to take anything that would make it worse. I was assured that would not happen, but....alas, it did. He said he's never seen anyone react this way, but from all I've read about hormones, I'm not surprised. Which progestin are you taking?
  #6  
Unread 10-29-2006, 01:06 AM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

Hi Winter12!

Do you see an endometriosis specialist? Can you see one? Do you have an endocrinologist maybe?

You need a dr who is very knowledgeable about endometriosis and HRT. I would not recommend stopping your HRT cold turkey without talking to a physician.

Yes, if you are taking estrogen, especially without any progesterone, it could very well be feeding any endo that was left behind.

If it is determined that your endo is back (the only sure way is to have a lap), you may be able to use some medications to treat the endo. During a lap, you could have the endo cauterized or excised.

You could also be dealing with adhesions from the prior surgery and the endo.

Talk to your dr(s) or find a good endo dr and see what is happening and what you need to do. in there and keep us posted!

  #7  
Unread 10-29-2006, 02:52 PM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

Thank you for responding. The OB Gyn that I am going to is also an endocrinologist. He specializing in HRT. He does have me on progesterone too, so it could be that I am just going through some sore of funk. The painful urination deal is the pits. I feel like I have a UTI more days than not, but there is no infection present. I am going back to my doc in 2 weeks, so hopefully he'll have some helpful advice for me on what to do going forward. I have some good days and some bad. I am shooting for more good days to come.

Thanks again for your advice/concern. It's just good to know that I am not alone in this.
  #8  
Unread 10-29-2006, 03:03 PM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?



I can tell you that I went through a "funk" for several months over the last year but it has all settled back down again! No rhyme or reason really for the "flare up" except maybe my hormones went through a change, stress, or who knows! But I know my pelvic region hurt, I had pain, fire, pulling, tearing, achy, you name it stuff going on for months on end. Then it slowly tapered away again.

I hope things get better for you soon and you are feel much better! Best wishes for your next dr's appointment!

  #9  
Unread 10-29-2006, 05:17 PM
Painful Intercourse, Painful/Frequent Urination & No Sex Drive -- Endo Back?

Winter12 -
Hi, me again! Did you by any chance have Endo on your bladder? I used to always feel like I was getting a urinary infection due to my symptoms, but then when I would go get tested, it would be negative. My previous gyn said that was a classic sign of Endo on your bladder and when he did my laprascopy, I did indeed have Endo on my bladder. Keep us posted on what your doctor suggests you do.

Lisa
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