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Old 05-09-2007, 07:10 AM   #1
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abigail09 HB User
Adenomyosis ?

First of all I want to thank all of you who took the time to respond to my last post about endometriosis, with very valuable information.

After I posted that, my Dr switched me from Yasmin to Seasonale. I've been on Seasonale now for almost 2 months, and have not had any breakthrough bleeding... but I would not expect I would yet anyway. I have gained some weight, but that's OK with me. Other than that I've been able to tolerate it well. However, I am still suffering some milder pain on an ongoing basis. I've had my first experience with what I describe as "lightening" sharp pains. This happened only once over a span of 4 days. I've also had mild cramping on and off, but no bleeding.

My Gyn is leaving her practice. She has been my dr since I was 18 (12 years) and is a very good one! So before she left I wanted to meet with her for my annual and to discuss my ongoing problems. She suggested that we schedule a MRI and a Lap. The MRI caught me by surprise. Apparently, she thinks that in addition to the Endo, I may also have Adenomyosis. I've spent the last hour or so reading up on this condition, and I must say I have the symptoms. I guess this is not such a bad thing... meaning it is not life threatening or anything, just painful. I plan to have one more child, so our plan is to treat any Endo found, stay on BC pills until I am ready to have a baby and just get through another pregnancy. She indicated after that, I may need "more invasive" surgery. My research tells me this would be a hysterectomy (but leaving the ovaries assuming nothing is found wrong with them).

During the exam, the pap killed! And when they (there was a student with her) both performed the pelvic exam there was this one spot they both hit that was really tender and quite frankly, hurt. She said that this was a nodule? and is a common indicator of endo. This is also why intercourse is painful... it's all starting to make sense now.

Sorry for such a long post, I guess I'm just looking for some information from you all. Has anyone been diagnosed with Adenomyosis? And if so was the diagnosis done via MRI? I've read conflicting information on this... some articles say a MRI is effective at diagnosing it and others say no. If you have this condition how do you deal with it assuming you have not had a hysterectomy? I am on Seasonale, but it does nothing to help with the heavy bleeding and cramping during my period. Really, the only benefit is that I only get my period 4 times a year.

Any information or advise you can offer will be greatly appreciated.

Thank you,

 
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Old 05-10-2007, 06:54 PM   #2
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abigail09 HB User
Re: Adenomyosis ?

Just bumping this message up to see if anyone has any advice to offer.

I'm also curious to know if anyone has any information on what, if any, effect this condition has on getting pregnant?
Thank you,

 
Old 05-12-2007, 07:29 AM   #3
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Re: Adenomyosis ?

I had adnomyosis and I'm sorry to tell you that the only cure for adno is a hysterectomy. I was diagnosed without an MRI, the enlarged uterus and nonstop bleeding left little doubt. I tried Seasonale because I wanted to delay a hysterectomy. That didn't work out for me and I had a hyst almost 2 years ago at the age of 28.

I was informed (and found information on the net confirming this) that it could be potentially dangerous to have another child with adno because there is a risk of implantation in the area where the adno is. This could mean implantation within the muscle wall of the uterus instead of the endometrial lining. It could also cause problems with placental attachment and placental detachment later in pregnancy.

Please seriously discuss the risks of having another child with your OB/GYN.

I can honestly say that *for me* the hyst was the best thing to ever happen. The pain and bleeding are over and I have my life back. It's not something to be entered into lightly but in the case of adno it is almost inevitable.

Last edited by lrmctexas; 05-12-2007 at 07:39 AM. Reason: Spelling

 
Old 05-12-2007, 07:54 AM   #4
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Re: Adenomyosis ?

Thank you so much for your reply, lrmctexas.

I do not have non-stop bleeding, however when I do bleed it is heavy and for 7 days straight. The last period I got was about two months ago, and with me taking the continuous birthcontrol. After that I was switched to Seasonale and so far so good. But as I said I still have some pain and do have an enlarged uterus.

I'm glad you are doing better now that you've had the hysterectomy. Do you have any children? I'm curious because I've read that this condition is primarily found in women who've already had children.

 
Old 05-12-2007, 09:22 AM   #5
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Re: Adenomyosis ?

I have two children and have also found from reading various message boards that adno does tend to affect women who've previously had children.

Last edited by lrmctexas; 05-12-2007 at 09:22 AM. Reason: Oops, I quoted when I didn't mean to.

 
Old 05-14-2007, 04:54 AM   #6
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Shapshftr HB User
Re: Adenomyosis ?

Abigail,

I have been diagnosed with adenomyosis, from having had surgery (myomectomy). Originally, based on an ultrasound, I was diagnosed with several fibroids, one abit large and a few smaller ones. Upon doing the surgery my doctor found only one marble sized fibroid, and the rest of what was seen on the ultrasound was adenomyosis. He cleaned out the pockets of old blood, but did not resect that area of my uterus. So essentially, the surgery was worthless, as it only served to remove the one small fibroid which was not the cause of my problems.

This is going to be abit long, so I will make this a brief history. I have been having extremely heavy periods for the last ten or so years. Periods from hell, bleeding so much I couldn't leave the house. The pain came on a few years later than the heavy bleeding, but became so severe that at times I was barely able to move. Every month when I got my period, I could feel my uterus was very enlarged, especially on the right side, and very tender. That is the area where my "focal" adenomyosis is. I went to my OB/GYN originally thinking it was fibroids, and he agreed, and confirmed it with the ultrasound.

He said that I have a "bad uterus", and wanted to do a hysterectomy then, since I am beyond my childbearing years. I refused. I do not want a hysterectomy under any circumstances other than cancer. So first we tried progesterone therapy for six months. That did no good at all. Then he wanted to give me Lupron, to completely shut down all my hormones, but I refused that as well. So I pushed for the myomectomy, in the hopes of saving my uterus. The surgery was worthless, since the diagnoses changed to adenomyosis once he opened me up and saw my uterus. So I went home accepting this problem, and hoping to make it through to menopause to get the relief they say it will bring. I am 50 now.

Something has changed in the last couple of months, and I'm not sure what is the cause of it. My periods have always been very regular, every 28 days. In the last couple of months, I had a couple periods that were two weeks apart. I began to wonder if it is the beginning of menopause. However, a few months ago, I began taking a zinc supplement, for various reasons I won't get into now, but zinc can affect hormones. Zinc is needed to produce testosterone, which men and women both have. So maybe that was what caused the change in my schedule.

But then I started taking Vitamin A and D a few weeks ago for some other problems I was having. This was when things really got weird. I started to get my period again two weeks after the last, with the usual uterine pain only very mild. But oddly, my uterus didn't feel as enlarged and tender as usual, the mild pain lasted only about an hour, and the bleeding which was more like spotting, completely stopped the next day. I then went two more weeks as I should have, and began my next period. This time it started the same, brief mild pain with less enlargement of my uterus, and light bleeding. By day two my bleeding was normal, and there was no pain at all.

I'm now on day four of my period, and am thrilled to say that it has been a huge change this month. Bleeding has been half or less of what is usually is, no pain other than that one twinge the first day, followed by about a half hour of slight tenderness, then gone. I have been palpating my uterus every day, and it has been less and less enlarged, and is not painful to the touch anymore. This is so unusual to be having my period without being aware that I have a uterus, due to the horrible pains of the past that made me constantly aware of it.

So with all that, I did some more research on Vitamin A and I think I have found evidence that a vitamin A deficiency is the likely cause of this problem as well as endometriosis and fibroids. I've been studying health, medicine and nutrition on my own for the last 30 years, and have a good understanding of all the technical jargon used. Based on what I know, and now what I have read regarding vitamin A, I am really curious to find out if it is in fact the cause, or at least part of it. In my case, it could be menopause coming on that is the reason for the change, although I have no symptoms of menopause.

I have a daughter who has endometriosis as well, and she has recently gone on the pill to try to get some relief. I am going to have her try this and see if it helps her. I would also like to see if it helps other women with adenomyosis, since I have four daughters that may someday be plagued with this same horrible condition. Since you are still in your childbearing years and would like to have a baby, I was wondering if you might be interested in trying it as well. If so, I can share the info I have found on it with you, and explain the vitamin supplementation further. This is not something you can do in a willy nilly fashion without understanding the proper forms, amounts and ratios of vitamin A and D to take.

If you talk to your doctor about it, he/she will poo poo it and say it is nonsense, snake oil treatment, and not to do it. Doctors are not trained in nutrition, and don't want to hear about it. They only want to prescribe drugs to treat symptoms, rather than try to find a real cure. So this is something you would have to try of your own accord if you are interested. The choice is up to you, it's your body. I just hate the thought of millions of women giving up their uterus so easily, just because they don't understand how their own bodies work and have to rely on doctors who don't care about us losing our truly wonderful reproductive organs.

Best wishes to you

 
Old 05-15-2007, 01:11 PM   #7
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Re: Adenomyosis ?

My only concern with recommending Vitamin A to a women of child bearing age (and the OP did say that she wanted another child) is that going over 10,000 IU a day at the time of conception or during the first trimester significantly raises your risk of delivering an infant with head, brain, or heart defects. Now this does not apply to beta carotene but I still feel that the disclaimer on the Vitamin A needed to be said.

 
Old 05-15-2007, 05:46 PM   #8
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abigail09 HB User
Re: Adenomyosis ?

Thank you for your story and advice, Staph. I appreciate you taking the time to explain your situation and I'm glad to hear how well you are doing. I had not responded yet, because I felt I would need to research the vitimans etc you suggested, as I have no knowledge of any of that. I have not had time to do that yet. But I will def look into it.

 
Old 05-15-2007, 05:48 PM   #9
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abigail09 HB User
Re: Adenomyosis ?

lrmctexas... Thank you for letting me know about possible complications with pregnancy. As I stated to Staph, I would need to do my own lengthy research before trying any of this. And I would talk to my dr. to at least make sure I would not be hurting myself anymore. I greatly appreciate you taking the time to let me know this information. : )

 
Old 05-17-2007, 09:41 AM   #10
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Shapshftr HB User
Re: Adenomyosis ?

Quote:
Originally Posted by lrmctexas View Post
My only concern with recommending Vitamin A to a women of child bearing age (and the OP did say that she wanted another child) is that going over 10,000 IU a day at the time of conception or during the first trimester significantly raises your risk of delivering an infant with head, brain, or heart defects. Now this does not apply to beta carotene but I still feel that the disclaimer on the Vitamin A needed to be said.
I acknowledge your concern with this Irmc. All I would like to say in regards to amounts, is that one could achieve the suggested results with no more than 10,000 IU a day of vitamin A, provided it is all natural from fish liver oil, and accompanied by 1,000 IU of vitamin D. And after all symptoms of vitamin A deficiency cease, those amounts could be lowered to the recommended RDA's for pregnant and nursing women. According to the Linus Pauling Institute, those amounts are as follows:

Pregnancy 19-years and older - 770 mcg (2567 IU)

Breastfeeding 19-years and older - 1,300 mcg (4333 IU)

But as stated in my last post, that must be with vitamin D in the proper ratio of ten to one, ie:

2,500 IU vitamin A with 250 IU vitamin D

4,000 IU vitamin A with 400 IU vitamin D

Also, these vitamins in the natural form from fish liver oil are fat soluble, and must be taken with a meal that contains some fat, for breakdown by bile in the digestive tract, in order for them to be absorbed.

 
Old 03-13-2008, 09:42 AM   #11
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Re: Adenomyosis ?Shapshftr

Shapshftr,

I saw your quote from a while ago and thought I would write. I did a sonogram today and the radioligist suggested I have adenomyosis. Freaking out a bit (more than a bit) seeing that the most likely treatment is a hysterectomy. I am in my thirties and look forward to having kids soon. You wrote..."I can share the info I have found on it with you, and explain the vitamin supplementation further." to Abigail after finding benefits from such. Would you mind sharing with me please. I want to know as much as I can. Also, anoone else who has had success treating or ideas...welcome these.

Thank you.

Alexis.

Last edited by moderator2; 03-13-2008 at 01:22 PM. Reason: please delete the quote

 
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