Irregular Periods and Fibroids

[Carrigon]

Owwwwwwwww. Got my period out of nowhere today, complete with massive cramps. I haven't been able to regulate my periods since the 80's. We tried with birth control pills. Worked temporarily, but then I couldn't take them anymore. They started to do something awful with my blood pressure and retaining too much fluid. And I'm back to suffering with never knowing when I'll get it. And I've got fibroids on top. My doctor said I have fibroids embedded in my uterine wall, so the only way of ever fixing that is a complete hysterectomy. And I was like, no. I just want to keep my body parts, if possible. I'm just so tired of having problems with it, though.

Anyone else with the same kind of mess?

 

[_Kim_]

Have you looked into Uterine Artery Embolization? I had the procedure done a little over a year ago and it has completely ended the painful heavy periods. Wish I could say that it has helped with PMS, but I'm as cranky as ever.

I wanted to keep my parts as well and this procedure only stops the blood flow to the fibroids and they die and shrink as a result. The procedure itself is minimally invasive - just a tiny nick in the groin. The pain afterwards is a 10 - about as bad as it gets. However, I will do it all over again if new fibroids grow before I reach menopause.

 

[Carrigon]

We'll see down the road. I can't afford the Ob/gyn right now. They upped my copay. It's awful. Everything went up, except my SS check.

 

[Sing]

How old are you, Carrigon, if I might ask? Are you in perimenopause?

I had a lot of fibroids which developed in my early 50s of all times, in a low estrogen environment, and my gynecologist wanted to do a hysterectomy because it was so abnormal. But I opted just for a D and C, so she could take tissue samples and see if there was any malignancy. There wasn't. I have kept my uterus and gradually these fibroids have shrunk as time goes on.

There seem to be lots of abnormalities with ME/CFS

Sing

 

[Carrigon]

I'm forty, but I've had problems since I got Fibro in the 80's. Prior to getting Fibro, my periods were regular, like clockwork. After I got Fibro, never normal again. I actually had Fibro before I ever got full blown CFIDS, so I've always thought they were two separate things. I think I am premenopause now.

 

[kat0465]

Owwwwwwwww. Got my period out of nowhere today, complete with massive cramps. I haven't been able to regulate my periods since the 80's. We tried with birth control pills. Worked temporarily, but then I couldn't take them anymore. They started to do something awful with my blood pressure and retaining too much fluid. And I'm back to suffering with never knowing when I'll get it. And I've got fibroids on top. My doctor said I have fibroids embedded in my uterine wall, so the only way of ever fixing that is a complete hysterectomy. And I was like, no. I just want to keep my body parts, if possible. I'm just so tired of having problems with it, though.

Anyone else with the same kind of mess?

Lord Carrigon,
dont get a Hysterectomy if at all Posible!! i had a total 2 yrs ago at 42, and it has made everything worse! the cfs/fibro/ and it hurt my heart for some reason. i was actually having a pretty good run of feeling better kinda remission thing
UNTIL i had that damn surgery,i regret is so much.Although now thats one less cancer i have to worry about getting, it wasent worth it. also they put mesh in me to suspend my dropped bladder, now my body is rejecting it and its growing thru my Vaginal walls

 

[Carrigon]

That's horrible. I don't want to do any surgery at all. The only reason anything would happen is if I have another bad bleed out. I had one last year so bad that I was soaking pads every few minutes for over two weeks. I was getting anemic and lightheaded from the blood loss. It just wouldn't stop. I had one like that the year before, too. But both incidents seemed to coincide with my having had soy milk. If I drink soy, I totally bleed out. So that's been cut out of my diet. I don't like that they hide soy in alot of things now. But if I stay away from soy milk and tofu, I don't get it like that.

 

[kerrilyn]

I have endometriosis and the GYN I saw wondered if I had Adenomyosis but there is no real way to diagnose that unless they remove the uterus. I too want to keep my parts. I've always had horrible pain with my periods and what seemed like nerve pain (intense burning) when estrogen was highest in the cycle. I did hormone testing and my progesterone was really low compared to estrogen, estrogen dominance, which can cause or make things like endo and fibroids worse.

I started taking bioidentical prog cream 6 months ago and I've been pleasantly surprised with how much it's reduced the pain. I barely have any cramps at all during my period and that nerve type pain is much much less. I hope it continues to work. I've heard people with fibroids have success shrinking them using prog cream. My naturopath has me on other hormone balancing herbs too. I did very poorly on BCP, almost suicidal and homicidal.

I've found the info on soy a little confusing, some say it's good other say it's not. But for me personally, because I have high estrogen/low progesterone I've stayed away from it. Diary is not recommended for endo either, not sure about fibroids. I use almond milk or rice milk instead.

I have heavy flow and I think the prog cream has helped with that too, but not to the same extent it has with the pain. Not sure if you've heard this but if you are low in iron, and it's kind of hard not to be when you have heavy flow, it will cause your periods to be even heavier. A vicious cycle. I'm also 40, but my periods are still like clockwork. I sure do not want another 10+ yrs of this.

 

[MEKoan]

I feel the need to share my experience because it is so different. I had endometriosis which caused very similar problems to the ones you are having and also invaded my bowel. I very reluctantly consented to a complete hysterectomy (uterus and ovaries) at 33. I was not allowed replacement hormones for 9 months because the piece of affected bowel could not be removed without risking an irreversible colostomy so they did not do the bowel surgery.

I recovered without incident and my overall health improved, too. There was a gradual but marked improvement in my ME symptoms which continued until I reached a remission to about 80% functioning, with periodic brief crashes, which lasted for many years. Eventually, I was prescribed premarin which I rather casually observed seemed to worsen my well being and I would simply forget to take it much of the time.

Aside form the emotional impact, which was pretty big, the only negative consequence was osteoporosis which I had developed before I was 40.

So, a very mixed experience but I believe the hysterectomy may well have had a positive effect on the ME.

 

[SaraM]

Calcium D- Glucarate is good for getting rid of excess estrogen.

 

[_Kim_]

For the last two years I have been thinking about having Embolization, but I am afraid of going into early menopause which sometimes happen after this procedure. I have quite a few large firbroids which cause heavy bleeding.

Yes, Sara, that is a possible outcome, especially if you are already peri-menopausal. I had my hormones levels checked prior to making my decision and there was no sign of menopause on the horizon.

Of all the options, I chose this one because it is not done under general anesthesia, it is done as an outpatient procedure, and it has high patient satisfaction.

Did I mention that it hurt like hell!! Not the procedure, but once the fibroids start dying, it's like having a heart attack in your uterus.

But...now I have normal, regular periods, and no more urinary frequency - sheesh I could even jump and run if I didn't have CFS to stop me. It really has made a huge huge difference in my quality of life.

 

[wciarci]

I suffered for years with endometriosis, had lupron injections, they grew back, had surgery, they grew back. Finally went into menopause and now have a fibroid. I am going in for a biopsy on Wednesday. I told my doctor to just take the darn Uterus out but she is waiting. After one year of no periods I am bleeding all the time! Endometriosis is a precursor for other illnesses, so I have learned. I believe it is considered an autoimmune illness now. It is not easy and I wish you luck!

 

[creekfeet]

I had a polycystic ovarian disease in my 20's, a presumptive diagnosis of endometriosis in my 30's, and at today's appointment with my sister's excellent gyn I learned I may have fibroids.

My sister had fibroids, a watch was kept on them for about 6 years and by then they'd grown so big the doc was alarmed and although she dislikes recommending surgery she recommended a hysterectomy.

My sister did some research (she's good at that) and found alternatives. A hysterectomy can leave one ovary intact which will take over the hormonal functioning of two ovaries, thereby eliminating the need for hormone replacement. That's the way this good gyn would do it. However, sister hoped to avoid surgery. Embolization worried her because of the "heart attack in the uterus" pain but more so because it can go wrong and mean a trip to ER with horrible sepsis if the "killed" tissues stay and rot instead of sloughing away.

The alternative she liked, and pursued, is a fairly new procedure: focused ultrasound. Trouble is, being new it's not available everywhere, but the Mayo does it, for one, and they tell all about it here: http://www.mayoclinic.com/health/uterine-fibroids-treatment/MM00705

That treatment worked great for her, reducing her fibroids dramatically and requiring no anesthesia, no hospital stay, just an office visit. I think women need to know about this and demand it so it will become more commonly available.

We'll see how my situation goes: exploratory ultrasound scheduled for Monday to see whether it looks like fibroids or endometriosis or what. I'll be hoping to hang on to my uterus because I don't want to take chances with the intricate dance of the hormones.

 

[_Kim_]

My sister did some research (she's good at that) and found alternatives. A hysterectomy can leave one ovary intact which will take over the hormonal functioning of two ovaries, thereby eliminating the need for hormone replacement. That's the way this good gyn would do it. However, sister hoped to avoid surgery.

Embolization worried her because of the "heart attack in the uterus" pain but more so because it can go wrong and mean a trip to ER with horrible sepsis if the "killed" tissues stay and rot instead of sloughing away.

The pain of embolization is not for the faint of heart. But the risk of sepsis only is present if you have pedunculated fibroids with slender stalks. This means you've got some Mr. Potato Heads with skinny necks sticking out from your uterus. When they die, they can break off and float around in your abdomen. MRI before the procedure is done to see if your fibroids are like this (most aren't). If you are a candidate, risk of sepsis is very very low.

The alternative she liked, and pursued, is a fairly new procedure: focused ultrasound. Trouble is, being new it's not available everywhere, but the Mayo does it, for one, and they tell all about it here: http://www.mayoclinic.com/health/uterine-fibroids-treatment/MM00705

That treatment worked great for her, reducing her fibroids dramatically and requiring no anesthesia, no hospital stay, just an office visit. I think women need to know about this and demand it so it will become more commonly available.

Yeah, this one sounded fantastic and I looked into it as well. The problem is, according to my doc, is that the technology is not good enough yet and all of the women she's seen who have tried it have ended up with severe burns both internally and externally. The websites don't mention that part. Also, it isn't covered by most insurance companies and when I checked a year ago, it was more than $15K. Embolization is typically covered.

 

[creekfeet]

Ah, well, as usual it's worth looking into all alternatives. My sister had no burns, and her insurance covered the treatment. Could play out differently for someone else, certainly. In my own case, it's all just starting, fibroids-wise, and perhaps Monday's ultrasound will discover something different, or nothing at all.

 

[Misfit Toy]

Flax seeds are also good for ridding yourself of excess estrogen. Ground up flax seeds. No soy!! A product called DIM is good for getting rid of estrogen, which then decreases fibroids. I had endometriosis, so I had to follow this religiously.

 

[Carrigon]

I can't have soy. I've also found that any milk or cheese products make me bleed. When I cut out the dairy and reduce the soy or cut it out, I'm not bleeding. It's just so hard to do that. They hide soy in alot of things, it's harder to cut the soy than the dairy.

 

[HopingSince88]

I had endometriosis, fibroids, and a whole host of other problems. I always had heavy periods and pain. But things got out of control at about age 35. At age 49 I had a complete hysterectomy, including both ovaries. Oddly, I did not experience 'sudden menopause.' In fact I don't think I had even one night of hot flashes. The surgery did not affect my CFS one way or the other, although I had been hoping that stopping the heavy blood flow might help with my borderline anemia, which it did. My only regret is that the Big O isn't as Big an O as it used to be (as the main muscle is now missing).

 

[wciarci]

No more big 'O'?

I am now rethinking the hysterectomy. I think I'll discuss all of the options mentioned here. Hard to give that up, on top of everything else.

Wendy