A woman issue with way TMI.

[lassiesma]

Ladies I need some ideas because I am nearing my wits end. I know peri menopause can be challenging but I feel like it is stealing my life. The doctor calls my problem estrogen dominance with a side order of fibroids. Over the past few years my period has gotten longer, heavier and there is less time between when my menses starts and stops. I accept that. My problem is that for the past 4 years it has been out of control. My cycle has shortened to 23 days, and my periods last no less than 17 days if it stops at all. I have had periods last as long as 6 months. It has become so heavy and full of large (ping pong ball to clementine sized) clots that the doctor suggested adult diapers which need to be changed every hour day and night for at least the first 10 days of each cycle. The cramps are out of this world. Urinating brings tears to my eyes and moving my bowels is almost more than I can bring myself to do.

I have tried progesterone in the form of prometrium and later pro-gest cream. Both send me into uncontrollable rages. I have tried diet modification removing beef, animal fats, soy and dairy from my diet and increasing exercise. My thyroid has been tested. The location of the fibroids prevents me from being a candidate for ablation. Hysterectomy has been discussed but insurance denied it and I'm not keen on it.

I thank you for reading this far and if anyone has any ideas I sure would appreciate them.

 

[Signwatcher]

I had a hell-of-a-time with my change of life, but is sounds like you are outdoing me.

I ended up having issues with VERY heavy periods and went through 2 (double-loaded) super plus tampons an hour. Thought I was gonna bleed out sometimes. Anyway, turned out I had an ovarian cyst and the dr gave me some hormone to take to give me a chemically induced D&C. He didn't tell me that I'd be shedding clots like you are getting. After that all got over with I still had the heavy periods for quite a while. Seemed like it took me about 12 years to get through the entire process without any other medical intervention. I am sorry you are having a most horrible time of it. I will pray for you, but other than riding it out, I don't have any other ideas than to change doctors and get a second opinion. I'm under the impression that IF you can keep all your parts in tact, do. I didn't even want to consider a hysterectomy. But it did make my life horrible for a few years.

 

[duchess47]

See another doctor and get a second opinion.

 

[Cardinal]

I know every woman is different, but that does not sound anywhere near normal to me. I am with Duchess, get another Dr.

 

[Mrs Smith]

(ok, I'm admitting more than ever before on a public forum, but if it will help you, here goes...)

Oh, I feel for you and completely understand your frustration. Throughout my life I had so many female problems, with periods lasting up to 11 months long, continuous. At times three tampons at a time were needed and even those lasted no more than an hour. Doctors tried all the different birth control pills to help control it but nothing helped. Two years after I got married, at age 33, with no children and no desire to have any, after years of begging for relief, I found a doctor in our new city who agreed to perform the surgery. I was elated!

I'd seen so many doctors over the years that every time I saw a man in a white jacket, I laid down and spread my legs.

About a week later it was done, vaginally so there was no incision. Yes! Four days later I went home and started healing. Ten days later I was in tremendous pain and drove myself to the doctor's office. He gave me the choice of going back in the hospital or trying home health care. I pulled in the drive and got out of my Explorer, and I was done. My 20-something yo neighbor dropped the garden hose, swept me up and carried me the house. Within a couple hours the health-care agency dropped off IV pole, IV bags, tubes, etc. At 8PM the male nurse arrived to teach my husband how to inject/flush veins, etc.

Improvement began, but about 10 days later I was so sick that DH drove me to the hospital where they gave me a shot given to cancer patients to control nausea. I had a severe infection, and the heparin and warfarin over the last 10 days was slowly killing me. They opened me back up the next morning and removed the "other" ovary. My case wound up in the medical journals.

$300k later, and I was healing. Life was good, and I never looked back. As bad as it was, I have NO regrets, even sending a "thank you" card to the doctor every August, every year. The two best days of my life were the day I got married, and the day I carried the boxes of pads and tampons to my neighbor's wife and said "I don't need these any more".

It's been 17 years now and I'm 50. I've never been on estrogen or anything else. The only side effect is complete lack of libido. Nada. Zero. We still have sex, but it requires lots of lube cause the oven is dry as a bone. If you can live with that, I highly, highly suggest you pursue a complete hysterectomy. If nothing else is working for you, then rid your life and body of the part causing your pain. You can't go on physically and psychologically as you have been. Free yourself, and start enjoying life. I waited 15 years longer than I should have, and again, I was only 33. Why would you NOT?

 

[FireDance]

Yes. Insurance typically wouldn't deny this if this doc knew how to write it up and present it.

This isn't an issue of discomfort and blood. This is an anemia issue. If you're NOT a medical miracle (don't have anemia after all this time, consider that complications from anemia can lead to heart failure, angina, paresthesias, confusion, fatigue, and inadequate tissue perfusion. You might be a medical miracle and not have anemia, but if your cycle is that long or unless the doc is testing for anemia every month or so and treating you if you have it, I'd rip that baby out and never look back.

Generally, hysterectomy is done less invasively than years before and it's not a big deal. (Any surgery is a big deal, but you get the idea.) At this point you're doing more damage trying to save your hormones and a screwed up body part than even an invasive hysterectomy would do. Get it out and take a pill.

Another thing to consider is that IF you've indeed had long term anemia it's putting your system into a constantly stressed out state all the time. None of it would be my idea of having fun, but bust a move and get your life back girl!

And consider this: if you wait and have problems after o-care comes in, then you may really be in a world of "stuff."

 

[summerthyme]

Absolutely agree that you need a second opinion!!

Then, discuss options. There may be a way to regulate your cycle with hormones, rather than the drastic "instant menopause" from a complete hysterectomy. But it doesn't sound like your doctor has a clue. Possibly an endocrinologist who specializes in female issues might help.

I'm not AGAINST a hysterectomy- for sure, they are life (or sanity) saving for some. I just know they aren't the perfect "cure" for many/most- they do have "side effects" and there are drawbacks- even years after menopause, ovaries and uterus do produce some low levels of hormones- you lose that with a complete hysterectomy. But menopause USUALLY is a "cure" for fibroids and estrogen/progesterone imbalance. If there's a chance you'll actually go into menopause shortly (within a year, maybe) you might want to pursue alternatives for a bit and give it a chance. (and I THINK there is a blood test that can give you an idea of how close "menopause" is, although I could be wrong. Ask the doc you get for a second opinion)

And if nothing else works, find a doctor who knows how to work the insurance companies, and have the surgery...

Summerthyme

 

[FireDance]

You know, something else to look at is ablation therapy. I had a friend who did this years ago for this so can't remember details, but I do remember she said it was uncomfortable and did stay home over a weekend and back off to work. If I weren't so tired I'd go see if I could find more info on it. This would be for heavy bleeding only and would have no effect on the fibroids obviously. I'll try to find info on it over the weekend for you if I can remember to. Whatever they use is like a cauterizing tool but more gentle. For some reason my brain keeps going "wire, wire, wire..." but since it's only had about 8 hours sleep the last 3 days you might want to disregard that part.

ST do you remember this? It was all the rage perhaps 7-8 yrs ago. Imagine the technology (if it is still in use) would have improved a lot over that time. Might buy you time if I haven't totally misremembered the whole thing.

 

[packyderms_wife]

I know every woman is different, but that does not sound anywhere near normal to me. I am with Duchess, get another Dr.

It's what I've been going through for the past year, it's normal for a lot of women. Whiskey helps, and lots of it! Aside from that bone up on the VitK, Iron, VitB's, Fish Oils, and your Calcium Magnesium Zinc supplement.

K-

 

[DIMDAL]

I noticed your change of diet didn't included carbs., I've gained my greatest relief from dropping carbs. I would also get a second opinion.

 

[Cardinal]

Also keep in mind, that should you go the complete H route, you can always get an Rx for bioidentical hormones, read some of Suzanne Somers books

http://www.suzannesomers.com/Blog/p...one-Replacement-Therapy-e28093-Literally.aspx

 

[summerthyme]

Firedance- I know what you're talking about, but she said her fibroids are in a spot where ablation won't work. Of course, that's one more thing I'd want a second opinion on!

During a time when we spent WAY more time at doctor's offices and in the hospital than I like to think about, we learned that MANY times what one doctor will tell you as "gospel" is, in fact, wrong. In fact, there are so many who can be so wrong, it's quite scary.

I was blown off by at least 4 different doctors who couldn't find anything causing severe, localized abdominal pain- although the history was clear that it started after hernia surgery, and after ruling out any other possibilities (it wasn't ovarian, etc) that adhesions were a reasonable diagnosis. When I suggested as much to two different surgeons, they LAUGHED at me, and one demanded "so, where, exactly, are these mythical adhesions, and how are they causing you pain?"

I told him that was HIS job to figure out- but that since I was firing him as my doctor, he wasn't going to get the chance.

I finally found a gynecologist who firmly believed (also wrongly!) that it was endometriosis. I knew none of the symptoms fit, but at that point, I didn't much care- I was willing to try almost anything to end pain that was rapidly becoming disabling at times. So, they did a D&C (I was also having completely unrelated very heavy bleeding) and a laparoscopy to find the endometriosis.

What they found was NO sign of endometriosis- but severe adhesions, one of which had completely enveloped the large bowel and was restricting it to a point where it was very nearly blocked. Once they cut away the worst of that.. problem solved. However, what I just wrote took FOUR YEARS of fighting with doctors to figure out. And if I'd listened to the first several doctors, I'd still be in pain.

And PW- no, what you're experiencing is not "normal". It does HAPPEN- obviously- to some women, but it's NOT "normal", and there ARE ways to correct it. I'm far from believing that "normal variations" in the female cycle are always a medical issue requiring hysterectomy or other drastic treatment, but at the same time, it's NOT necessary for women to become virtually housebound, or to risk serious anemia and other potentially serious health issues because a doctor can't figure out how to help them with their abnormal issues! There certainly are fairly wide variations in the normal female cycle, and as long as those variations aren't causing pain, disability or other medical problems, that's one thing. But once you get into the sort of problems described in the original post, you're way outside the "normal" parameters, and treatment is appropriate.

SECOND OPINION TIME!

Summerthyme

 

[lassiesma]

I thank you all for your comments. You've given me a lot to think about.

 

[Up and Away]

I had similar symptoms and was having a full period at least twice a month and my hormones were crazy. I tried many things to regulate it but nothing was working. A sonygram showed I had adenomyosis. There are a few options with that diagnosis but I chose to be done with it completely and had a hysterectomy. So happy that I did. I healed up fine and don't have any residual problems from it. I kept my ovaries but without the damaged uterus, no more huge ups and downs because of the constant periods and pain (thank the Lord!).

 

[summerthyme]

Up and Away- so glad you found the answer for you.

Your post does point out that it doesn't have to be "all or nothing". Doctors are finally coming around (somewhat- not all of them, sadly) to finally realize they were wrong all those years. The maxim "no ovary too good to keep, no testicle too bad to remove" was clearly based more on emotional garbage than facts!

IF someone doesn't have any family history of ovarian cancer and no other risks for that disease, and IF their symptoms are mostly uterine based (fibroids, endometriosis, etc) a partial hysterectomy may well be a viable alternative. Of course, uterine ablation or other less-invasive methods should be considered first, but if there are large fibroids and you are of an age where menopause is at least several years away, removing the uterus may give you immense relief, without losing the benefits of the hormones the ovaries will continue to produce until menopause.

And as always, if "insurance denies" coverage for something *at least TWO doctors* and you feel is imperative for your health, you CAN get most things covered with adequate documentation AND being a squeaky wheel. It sucks that it should be necessary, and for sure, there ARE many un-needed surgical procedures performed by docs who like the added income, but that shouldn't mean that people who NEED the surgery can't get it paid for. Frequently, the best approach is to ask the company (via letter copied to everyone you can think of, including your doctor, and the president of the insurance company) "so, you are guaranteeing that you'll cover any health problems that result from you refusing to cover this proven procedure being recommended by my board certified physician after all other options were considered?"

It's pretty sad that people need to get proactive about getting needed procedures covered, especially since they often aren't feeling very well at the time when they need the help the most.

Isn't Obamacare going to be wonderful?! <gag>

Summerthyme

 

[psychgirl]

This thread scares the waddin' outta me!! I will never whine about the nasty hotflashes ever again after reading what else can happen during perimenopause. My periods stopped about a yr 1/2 ago, with occasional spotting and cramps. The worst part has been the flashing/fatigue and brain fog.


Thanking God for my blessings.

 

[WildDaisy]

See another doctor and get a second opinion.

I second this. I just had a myomectomy this past year and had the same symptoms you do. I am not pre menopausal yet, but my periods were very heavy, clotting, and I was anemic (make sure you are taking a multivitimin with iron in it to help, you have to be anemic too). I also did NOT want a hysteroctomy and we want to be able to have one more child (hopefully). They put me on birth control with iron for about 6 months to see if that would help with the heavy periods and it did a bit, but we still had the fibroids and cyst to deal with.

I had five fibroids two of which were deep in my uterine wall and and a 7 cm cyst on my left ovary and the surgeon was able to get them out. Obviously, I had to go the full surgery route and not the robotics, so recovery was months. Still not 100% 10 months later, but no where near what I was going through.

Find a fertility/Endo specialist in your area, NOT your regular OBGYN.

 

[summerthyme]

This thread scares the waddin' outta me!! I will never whine about the nasty hotflashes ever again after reading what else can happen during perimenopause. My periods stopped about a yr 1/2 ago, with occasional spotting and cramps. The worst part has been the flashing/fatigue and brain fog.


Thanking God for my blessings.

AMEN!! Menopause has been a breeze for me... no complaints at all, really. Yes, I was having some fairly problematic hot flashes/night sweats (when you toss the covers off/put them back on 30+ times a night, you don't get a whole lot of restful sleep! LOL!), but I started using this product- and it solved ALL the symptoms.
I'm now down to taking 1-2 caplets 2-3 times a week... if I stop completely, I start getting hot flashes again, but it's taking very little to keep everything under control now...

http://www.vitacost.com/source-naturals-eternal-woman-hot-flash/?NttSR=1

Summerthyme

 

[straightstreet]

I found this thread thru search here. I've had cervical pain since Nov. I'm diabetic and see my internist regularly so at my last visit I told her I was having cervical pain that wouldn't go away. Like a headache but the other end lol Anyway, she called and got me in to an obgyn. I went yesterday. Cervix tissue looked healthy looking in and I've never had an abnormal pap. I still have regular periods with no period pain/cramping (I've been blessed) She wanted me to have an ultrasound too. During the ultrasound my ovaries and uterus looked normal but there's a large fibroid behind my cervix 3 inches in diameter. (I'm quoting the ultrasound tech. She said the pressure and weight on my cervix has to be painful! ~Yes it is!~) So I asked what do they do for those? She said hysterectomy. I said I don't want one of those! Yes, I'm perimenopause but there has to be options. My mom had a full hysterectomy in her 30's. She's been taking replacement hormones for 30 years. She's mentioned regreting it. I'm online researching alternatives this morning. I have another obgyn appt to discuss the ultrasound findings/next step on Thursday. Dr. may just suggest other alternatives herself. I won't know until then. I would like to ask for prayer also for anyone who happens to read this and I thank you for it.

 

[summerthyme]

straightstreet- you've got it. But remember- you don't HAVE TO have a full hysterectomy- they *can* just remove the uterus, which leaves healthy ovaries to produce the hormones you need, and you'd go into menopause normally at the regular time (whatever that may be for you personally- "normal" can be anywhere from 38 to 55, with some outliers).

It's also possible- generally only done if you want to preserve your fertility- to simply remove the fibroid itself. If it's a single fibroid, that's a lot more practical than if there are multiple tumors...

Talk it all over with your doctor, but I don't blame you for wanting to avoid medical menopause a bit!

Summerthyme

 

[packyderms_wife]

I had a large fibroid removed laprascopically (Sp?) doc used a laser.

K-

 

[WildDaisy]

Straightstreet - Go see your Endocrinologist/Fertility expert. You do not need a hysterectomy. I had a myomectomy, which just removed the cysts/fibroids and left all my womanly parts in tact. Depending on the location, you can have the laparoscopic, which uses robotics and is minimal recovery period (three small incisions where the scope is inserted), or if it is in a harder to get location, or embedded in uterine wall, will need a full myomectomy (full open surgery), which has the same recovery time as a hysteroctomy.

 

[kyrsyan]

I second (or third) the idea to get a second opinion. I know you can't have ablation, and it's not the miracle that they like to say. My girlfriend had very similar issues for years and did ablation. It got slightly better but not much.

She actually didn't get it to balance out until she had to deal with another issue. It turned out that she has psoriatic arthritis. They put her on drugs that didn't really help, and did really hurt. So she decided to try a long shot and see a nutritionist. She has followed his guidelines strictly for a year now and we are both amazed at the results. Her numbers for inflammation dropped so low that they are low for a normal person. And the meds that she used to pop like candy are now very rarely used. In addition to the arthritis issue, her insomnia disappeared, her bleeding stabilized and went back to regular patterns, and her quite regular migraines have now extremely rare.

In truth the only issue that she is still dealing with is a memory issue that came about after a severe concussion from a car wreck. And she's about to see a new neurologist about that.

 

[straightstreet]

Thank you all for your replies! I sure do appreciate them!!!

 

[Border Guns]

My sister was anemic from when she was in high school and always had long lasting periods. All of which got worse with time passing. Finally when she was almost 50 she had her uterus removed and what a difference that made in her over all health. She finally gained some weight and had color in her face for a change. She got stronger and more energy. The doc left in her overies and in her mid 60's she got cancer there. So wish they had taken every thing out.

 

[straightstreet]

Border Guns, I'm very sorry about your sister. I'm seriously going to consider and pray about any and all options the Dr. may give me. What I'm praying for is more than one-more than a hysterectomy option or a total hysterectomy option when my ovaries and uterus look fine on ultrasound. My cervix is really, really sore today though...ugh. No bleeding though thank goodness but it feels like a 10 pound weight in there. Lots of pressure.

 

[Broken Arrow]

Ive been in your position. Best thing I ever did was have a hysterectomy.