I have questions - adenomyosis

I posted to you ladies about 6 weeks ago and you were all very kind.I am the one with very inconsistant hormone testing .My gyno didn't want to treat my 10 day periods untill all endocrine testing was done in case something else was causing my periods.My last batch of testing is done and all the hormones that were not in range(progesterone,male androgens,Cortisol)are all normal to high normal so he sent me back to gyno,who I see Monday.All the other tests show is that despite 3 months of iron therapy my iron is still dropping and that my estrone(?) is slightely low.My gyno has brought up adenomyosis but said that some times the only way to prove it is to remove it.I am ok with that part as I'm "done" with my parts.I have a 10 and 14 year old and my husband was "fixed" 9 years ago.My problem is that I'm still not sure there isnt something else causing this.I cant imagine hormone levels like mine self correcting. I think they may be treating symptoms and not the problem.I would do just about anything to stop these periods as I literally dont function for 1/3 of the month,but I need to be comfortable that they are treating the right thing.Can anyone tell me if they had health issues that they didn't think could be caused by "girl parts gone bad" but yet after surgery found they disappeared?
Also,under the tmi setting,did anyone with this adno find they could only poop during their period? I know its a weird question,but I'm wondering if the lining gets so thick that it pushes against something.Sorry for the question but I'm desperate for some info!
Amber
Ps-I know that cysts can produce hormones of their own,and seem to have several cysts at all times.My basement theory is that when some of these hormones are high I have more cysts.Then they pop and dont have the surface area any more so my levels drop.Has anyone ever heard anything like that? Can anyone tell me what multiple dominant follicles means?They decided I am anovulatory because thats what I had at a time of the month when I shouldnt.

Hi Amber,

Adenomyosis is notoriously difficult to diagnose and there are many women who don't know for certain that they have it until the pathology report comes back after their hysts. Sometimes it can be diagnosed via an MRI, but not always. And an MRI is pretty expensive, so not all docs will order this test. Also, a hyst is the only certain "cure" for adeno.

Bowel issues are common with conditions like endometriosis - is there a possibility that you have this too? I had my TAH/BSO about 2 1/2 years ago due to severe stage 4 endo, but I also had adenomyosis and a history of fibroids. I had lots of problems with constipation prior to my hyst. Like you, during my period things would "loosen up" and my bowels would function more normally, but I had a lot of misery most days of the month. Since my surgery I am soooo much better. My colon is still sensitive, but nothing like what I experienced prior to my hyst. I was amazed that all the pain and problems really could be caused by reproductive problems when it seemed like my colon was the culprit. This is one of the reasons diagnosis can be so difficult. But yes - the problems could be due to reproductive problems.

As for your hormone levels causing at least some of the problems - yes, I think that's possible. Any time your estrogen levels are high, that can be stimulating estrogen-sensitive tissues like endo. Have you gotten a second opinion from another gyn, just to confirm the probable diagnosis and suggested treatment? If not, I highly recommend you take this extra step before making a final decision.

Keep us posted on how you are doing and what you decide. Sending hugs your way.

Beth

Beth,
I dont know about the endo.How would they know? I had a pelvic ultrasound to look primarily at my ovaries so they didn't do the internal exam because they felt they could see all they needed to see. I also had a ct scan on adrenals and pelvis-thats what showed them enlarged ovaries and cysts and led to the u/s. Would either of them show endo under those circumstances?
The doc I'm seeing is actually my 2nd opinion.The firtst one wanted to put me on stool softeners and bc.I am a poor cantidate for bc because of age and weight and smoking history. She did a biopsy because of a thick endometrial lining but only found a uterine infection.That has since been treated but has not stopped the periods at all. I have read alot about adeno know,and I seem to be a textbook case.I just dont want to jump the gun and do something so drasic because I'm desperate for relief. I have also read about lupron shots as being a temp fix and am thinking about requesting a shot at those first.I dont know if its worth putting my family through the mood swings that seem to go along with it.
Any advice is appreciated,and thanks for your response.
Amber

Hi Amber,

The only way to get a definitive diagnosis of endometriosis is with laparoscopic surgery - they literally have to "look" at your pelvis to see the implants. It can be suspected, but not diagnosed via ultrasound or MRI or examination, unfortunately.

As for trying Lupron - you can always try less invasive treatments first. If you get good relief, perhaps you won't need a hyst. A hyst is generally considered a last resort after other treatment options have been tried and failed.

Keep us posted on how you are doing and what you decide. We'll do our best to provide support - whatever your decision.

Beth

Hi Beth,
I am back from the docs,and have decided to have the hysterectomy.My husband and I have talked this over at length,and he was all for it because he knows how miserable I am. I was still on the edge even when I went in to talk about options.She said several things that made great sense to me.
1-My lining is too thick,and nothing showed on the biopsy other then the uterine infection.Even after that was cleared up my periods were unchanged.
2-My symptoms are pretty much textbook for adeno as far as always having normal periods untill a little over a year ago,and they steadily get worse in flow and pain every month.
3-My anemia is getting worse despite iron therapy to the point of if we dont get it under control I will need blood transfusions soon,and will probobly need one befor surgery.

I am not a cantidate for b/c pills.We tried provera to at least slow down the amount of flow along with ibuprophen therapy.That didn't work.My hair is comming out,some thing I did not know was a side effect of anemia.I have no regrets about the loss of the uterus.If a friend treated me the way my uterus has lately,they wouldn't be my friend anymore!!My only hesitation was the actual surgery.She plans on doing the surgery vaginally.The plan is to leave the ovaries intact,but she wants to see them befor deciding because of my history of cysts.She would like to see what kind of shape their in.I would obviously prefer to keep them,but they have caused me their own set of problems,so if they are bad,I can deal with that also.She would like to do the surgery befor the end of June,but if I'm not ready she will give me the lupron so that I dont lose any more blood befor then.I'm ok with that.The hard part was the decision.Now that I made it,lets get it done.I should find out what day tomorrow,and will try to figure out where to post it1 Thanks again for your help.I will have to hit the pre-op board for more info now,so I hope you visit there too,
Amber

Hi Amber,

Just wanted to wish you well as you make plans for surgery. I know how difficult this decision can be, but I truly hope that this will bring you much needed relief.

You'll find great support on the Pre Op forum. Sending many hugs and positive energy your way!

Beth