A year and a half ago, due to dermoid cysts and endometriosis, I had a total hysterectomy at 37 years old. Since I was younger, and now without my ovaries, my doctor put my on estrogen. I tried pills, sprays, gels, patches, and an internal 'ring' similar to a diaphram. I had negative reactions with each of these in varying degrees. The lesser of the evils was the patch, so that is what my doctor recommended I stay on. Shortly after surgery I began to develop a slew of new 'symptoms' from stabbing head pains to severe abdominal pain, memory loss to a racing pulse to name a few.
Eighteen months and thousands of dollars later and I still had zero answers. Since my nightmare began about the time I started hormone replacement, I decided to go off of estrogen, and see what happened. Well, six weeks later I have had about an 80% reduction in headaches, abdominal pain, and memory functions. Saw my doctor yesterday and he said a LOT of women put on estrogen are better off without it, and do come off of it and are fine. He encouraged me to try black cohosh for the hot flashes; the only thing estrogen did do for me is quell those. I am interesed in hearing from anyone else who might have had similar situations.
Vicki
Has anyone else had a negative reaction to estrogen therapy?
- Posted:
- 31 Mar 2010 by Vicki70
- Topics:
- estrogen patches, vivelle-dot, endometriosis, hysterectomy, hormone replacement
Responses (5)
mfpdfibro3 Apr 2010
I had a similar situation where the addition of estrogen or HRT's caused me to become very angry, occasionally violent and very depressed. The complete hysterectomy I had did not cure my pain either so I finally found a very good OBGYN from a local university who did the proper palpitations, took the proper hormone tests and even an ultrasound after discovering I was still manufacturing enough estrogen as a woman with both of her ovaries still in tack. I guess having endometriosis, which I had had for over ten years at that time, could cause you to be estrogen dominate, your body creates too much estrogen. He put me on Birth Control Pills, which took care of the hot flashes and do not cause any side effects at all. I couldn't be happier, and always have to joke about having a complete hysterectomy and being on birth control pills. There is NO WAY I am getting pregnant. Heee Hee. Good luck to you, I hope this helps!!!
endomommy0816 May 2010
wow hun well i have tried the bcp's and the shots i did the lupron no help there and now i am on depo provera shot which seems to help not as bad as the lupron i think the depo provera shot is not the estrogen kind i think it is progestren full on but it has helped so far crossing my fingers it continues to do so as all the others have failed on me i have endometriosis and i am hoping the depo provera shot works other wise it is total hysterectomy time for me even though i am only 25 oh and another thing to try if you have the abdominal pain and cramping <and if you like hot tea> take camomile tea and mint tea and seep them both together and add just a touch of honey <for taste> and enjoy i have found with those two teas together i do not get hot flashes or night sweats or the cramps and pain as bad but without my tea oie i am a mess hugs hun hope this helps
10 Jun 2010
I had a very similar situation and handled it the same way you did. I stopped my estrogen therapy all together, but of course was left with hot flashes. I finally had a decent doctor do a blood hormone test. Something really simple that most doc's don't even bother to do. Because the endo caused an ovary to be attached to some of my intestines they cut away in favor of the ovary versus the intestine. The little bit of ovary that was left was still producing large amounts of estrogen. He thought that putting me on birth control pills would be the best form of HRT and he was right. No more hot flashes!! It is kind of funny to be on birth control pills while having absolutely no female body parts. I mean if I end up pregnant it will be baby Jesus and trust me I am no Mary!! Hee Hee I hope this helps. Oh! Dong Quai might be the better herbal choice. It evens out your hormones!!
15 Apr 2011
vicki70 I to had a bad reaction to vivelle dot.I went on it in 2003 after a complete hysterectomy. I started to get severe dizziness the doctors couldn't figure out why.I had to have several bypasses 1 every year for the next 5 years they said I had a vascular problem.Then I started to forget things and in December I noticed that the patch was starting to burn in the places I put it. So I asked my pcp how long should I use this patch and hesaid to stop but I would have withdraws because of the length of time using it.Well I did . had some withdraw symtoms.But have not been dizzy since and no more memory loss.Its a shame I had to take early retirement because of one medicine that noone really knows how it will effect a person. It also will mess with your blood pressure too.
20 Nov 2011
Hello I have had endo for 22 yrs been very lucky to get pregnant with the help of ivf had 5 children .but still suffer with it every mnths pain bleeding I've had 5 surgerys from the age of 18- 40 and going in for another one after the holidays ... I've tried so much meds my body has had enough I felt horrible with the ups and downs ... so iam surprised the doc put u on any estrogen that feeds the endo ... Do some research u will find how bad it is for us women I started using progesterone cream and at first was not sure of it but it does realy work I was so happy the pain was not making me double over and my periods are not for 3 weeks anymore so iam not sure how.it works for everyone but iam on my 4th mnth and going to see how it goes ... best of luck. Sherry
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Hey, I read your post and was wondering about a couple of things. Have you found an OBGYN that truly understands and has a good knowledge of Endo? It is really hard to find a good doctor and then one that will actually perform the necessary tests to REALLY help you. I had my complete hysterectomy because I was in so much pain, but directly after was STILL in pain. I knew something was wrong when my doctor visited me in the hospital and said that there really was NOT a lot of ENDO in there like there had been in the past. After a couple of years of thinking I was crazy and continuing to be in horrid pain,
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I found an OBGYN that could properly palpitate the muscles in the pelvis and discovered that every muscle throughout my pelvic floor and abdomen (because of all of the surgeries (and the hyster was a C section due to too much scar tissue) were taunt containing "trigger points". Thank God he knew someone who had studied this and was a Physical Therapist, but I had to drive 48 miles one way to see her. It was worth it as she finally was the only one after so many years of pain that could and did actually help me. It was not fun at all. (She had to find and release (through pressure) trigger points through my Vag, yeah, good times, NOT! I found out that I was usuing the wrong muscles to pee so I had to relearn how to pee, but she finally and in not much time at all got me pain free, for awhile at least. Oh, about your tea and endo, do whatever it takes if it works don't let anyone tell you any different. There is a chinese herb called Dong Quai (sp?) that is supposed to balance your hormones. It comes in capsule and/or tea, but the capsule is definitely more potent. I would recommend the capsules. Anyway, If your hormones are high it brings them down, if they are low it brings them up. I am an open minded sceptic, but after taking them for a month I actually had a completely pain free period which as far as I know only happened that one time. I completely and wholeheartedly recommend looking into that, just make sure it is good quality like Solorgay or something from a good privately owned Health Food Store. Well, I guess if you are on Depro they are trying to deplete your body of estrogen. I took Synerel it is an hr antagonist nose spray?? I took it when I was 23, didn't have my hyster until 32 and managed to have two kids before. I am 42 now and still in pain after my hyster. I am sorry that you are suffering from Endo, but do keep an open mind that that may not be the only thing going on. You know how Endo pain radiates out like tooth pain? I mean your comfort circle gets so much larger when you are in Endo pain. I never wanted anyone near me, but anyway, because of the pain, you tighten those muscles and sometimes without knowing when you get stressed out or have any emotional stress you tighten your pelvic muscles instead of how some people tighten their jaw or their neck or shoulders get tight when under stress. That is what happened to me. I was in a very toxic marriage and every time I got better It would come back, so I finally got divorced and was able to be pain free for a year and a half before it all came back again due to financial stress. The hard part is finding doctors or physical therapists that understand deep myofascial pain. It took me actually a year to get help this time, still working on it, not satisfied with my PT's. It has been so bad that I have filed for disability. I hope my reply was not too long and that it helped you out.
God Bless and may you be pain free and comfortable as soon as possible. You are too young to have to face this crap. I don't want you to be 42 like me and still in pain. I have spent more than half of my life in pain. It sucks!! Take care!! Kris
thanks kris,
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well unfortonally i did have a awsome doc who was a male <haha go figure a man would know more>who really took the time and energy to help understand my pain and my issues with the endo but of course because my husband was medically discharged from the military i only had a short time with this doctor and now that we can not get medical help from the state or the va <what else is new,hurry up and wait thats the military/va/s.s.i's moto i think> so i go to my local health clinic which the doctor i am seeing now well she does not believe in pain meds she wants to do horamone treatments and well like i said i am only 25 and dealing with this endo my mom was the same way she was 27 when she had her partial hysterectomy and the doctors have all told me one step at a time with trying different meds i wish somedays i could go back to the male doctor that treated me like i was a human not a guienne pig because like i said he would sit there and listen to my problems and my concerns and told me it was up to me what treatments i thought would help me i know when we lost the military coverage <tri care> he tried so hard to keep it for me to see if he could help me but even he could not i told my husband if the va were to give him 100% then when i get my medical coverage back i knew exactlly who i was going to see due to him know about my history and medical issues and actually caring about them lol