Hyster vs. Watchful waiting

Hi Sisters, I'm hoping someone has some advice - I am so confused right now.

I have 'beginning fibroids' w/ 6-8 wk. uterus. I have mild to moderate symptoms : heavy bleeding some months and other months a 1 day period. Frequent urination, constipation and lovely hemmerhoids(sp). And a family history of Endo.

My Dr. would like to take a watchful waiting approach and see if the fibroids grow in the next few months. I am getting a second opinion, but have had the same Dr. for almost 17 years so I generally trust her judgment. However, my fear is that the fibroids will grow quickly and therefore make surgery harder. Right now I could have a TVH ( assuming minimal scar tissue from a c-section)and from reading the posts here a TVH seems easier than a TAH.

But I don't want to have unneeded surgery either. Any thoughts anyone? I know I am probably rambling (sorry) this has just been on my mind today and I wanted to ask for help. I'm so confused. Thank you all so much . Love & Hugs, Michelle

Hi

Are you having any symptoms? Pain, heavy prolonged periods? A hyst is a major step, and typically your insurance company is going to require other treatments be tried first, unless you DR can prove to them that this is the only option. I was told that the uterus usually needs to be 14-16 week size before they'll go for a hyst w/o trying other things.

I'm glad to hear you're getting a second opinion. Please read and research as much as possible so you and your DR's can make the best decisions for you.

Best wishes.

ps: your post was moved to the Options and Alternatives Board since you are in the decision making process about whether or not to have hyst.

Hi,
In the last few months my periods have gotten heavier, with the exception of March which lasted only one day but was very heavy.
I have always clotted and just assumed it was normal.
As far as other symptoms I urinate constantly have bouts of constipation and have lower chronic back pain & pain in both hips. I am assuming these are fibroid related but am going to wait and see what the Dr. says.

Thank you for your reply and for pointing me to the correct board.

Hugs,
Michelle

Hi michelle17
I also have fibroids. Heavy bleeding with clots is essentially my only symptom; I was also anemic but that is going away with iron supplementation (I have been prescribed so much I feel like maybe I should just eat a couple of 16-penny nails with breakfast every morning ;-)

Right now my dr has prescribed BCP to reduce the amount of bleeding. They seem to be working, so far, after a little tweaking of the estrogen/progesterone ratio after the first two months. However, a lot of the info I have seen here and elsewhere indicates that for some women they work over the long term, and for others they only give a few months' respite. Since I've only been taking them just over 3 months, I don't know yet which group I will fall into.

I've also read 2 books, both by doctors, about using BCP for total suppression of the menses. BCP are sometimes prescribed to be used this way by women with endometriosis and other conditions where a "steady state" hormonally may be to their advantage. I mention period suppression because I wasn't sure from your post whether you have endometriosis yourself, or just family members who do...One of the books was "pro" menstrual suppression and the other decidedly "agin' it". I have to admit that what the latter doctor says about the potential side effects of BCP used over the long term (I am probably still several years from menopause) has got me back at my research to see if I can find alternatives to them.

One thing I am in the process of checking out at this time, which sounds very hopeful, is the progesterone-releasing IUD (which I am going to call the P-R IUD for the rest of this post) or vaginal ring. Some of the info I found with a google search ("progesterone-releasing" + IUD + bleeding + fibroids) also says that these devices can cause shrinkage of the fibroids as well as decreasing the bleeding. This *might* help with your symptoms of frequent urination and constipation, although with "beginning fibroids" I am rather surprised to hear that you have symptoms I have always thought of as related to big fibroids...Have you asked your doctor whether something else is going on in there in addition to the fibroids, maybe a prolapse? (I'm only guessing here, based on the big stack of books I've read since being diagnosed with fibroids myself.)

If the P-R IUD causes shrinkage, this would seem to me a better idea than BCP, because BCP contain estrogen, and estrogen can make fibroids get bigger. Anyway, the amount of hormone in the P-R IUD is much smaller than the amounts you get in BCP, so it might be less likely to cause side effects, although some women do have side effects from them. I am definitely going to ask my gyn for further info about this option. Whether women with fibroids should use these IUD's is something that appears to be in dispute still, even among the doctors. The first result I looked at from my search said that women with fibroids shouldn't use them, I think because if the uterine cavity is irregularly shaped the IUD is more likely to be expelled or to cause pain. The next result said, the P-R IUD produced a significant decrease in fibroid-related bleeding. They seem to be used much more frequently in Great Britain than the US for treatment of fibroid-related symptoms so maybe some of the British hystersisters will have something to say about it.

Some other options I've seen for reducing size of fibroids are myolysis and cryomyolysis (zapping the fibroid with laser, electricity, or super-cold, causing it to die and shrink up); embolization (cut off its blood supply with tiny particles delivered to the relevant blood vessel through a catheter, causing it to die and shrink up); and myomectomy (surgical removal of the fibroids only, leaving a more-or-less intact uterus). These may or may not reduce bleeding as well as size, and they may or may not be permanent. Some of these are appropriate for maintaining fertility and some are not--you didn't mention whether this is a concern for you.

Hope this helps, I wish you wisdom in finding out which option is best for your situation

cookie1956

Hi Cookie,
Thank you so much for all of the information you have provided , you have given me much to think about and definitely proven that research does pay off.

At this time we (my Dr. and myself) are assuming it is fibroids. I have an ultrsound later this month to see exactly what is going on. I went to the Dr. in December after a very heavy period, I woke in the midle of the night gushing then proceede to leave a trail to the bathroom and a mess in there. I had not been for a check up in 5 years (I know this is terrible and I have no excuse other than self neglect ).
During my exam she stated my uterus was enlarged to 6-8 weeks size and then asked about family history of hysterectomy. My mother is one of five females in her family and they all had hysters by the age of 40.
I was asked to come back in 3 months for a re-check. When I went back in March she said my uterus was anterior(not sure what that means) and still enlarged approx. 6-8 wks. and asked that I shedule an ultrasound after April's period - and that I probably have early fibroids. I do not have Endo. that I know of but due to family history I am a little frightened of what the ultrasound will show. Also ,I am wondering if the fibroids may be larger than the Dr. thinks. The frequent urination and constipation have started occuring within the last year and I had just attributed them to getting older (almost 37).

Maintaining my fertility is not important - I have 4 wonderful daughters and do NOT want anymore . I adore the children I have , but they are plenty . LOL.

Again, I sincerely thank you for your very informative post. It means alot that you would take the time to share this with me. I believe I will print it to re-read later and also to let hubby read.

Hugs,
Michelle

p.s I forgot to wish you much luck & healing on your journey.

Hugs,
Michelle

Welcome, Michelle!!

I am in a similar situation-wait and see. My MD has said he could perform a myo. to preserve my fertility(have kids, ?want more??), but the procedure is not detrimental to have at this time. He stared that quality of life is a reason if I feel I want to have surgery. What you decide to do will depend on these and other factors. Is a myo. an option for you? Are you at the point that you are ready for a hyst(?is anyone ever really ready?) Are you anemic from blood loss? I am glad to hear that you will have another vag. ultrasound to check size and position of the fibroids. Endo. can not be seen by external views-only by laparascope. There are vaginal changes that can be examined for and symptoms that can point to endo. You mentioned that your uterus is anterior. The word itself means that something is
behind or in the back of something.(like your abdomen) Maybe the doc. was refereing to position of fibroids? I was told that mine are posterior. Size is not the only factor in determining treatment of fibroids, which it seems you are already finding out.

I really wish you the best in your decision.

Hi Periwinkle,
Thank you for replying , it's so nice to hear from someone who is at the same stage as me.

Right now I'm not sure what my options are. The Dr. found that my uterus was enlarged while doing my annual check up. After this months period she will do am ultrasound to see exactly what is going on. Before I have the ultrasound- I'm trying to educate myself as to what my options are -I thought this way I would know what she was talking about if she metioned different treatment options.

I'm not sure what she meant when she said anterior - she was doing the pelvic and said to the nurse "Her uterus is anterior" I didn't even think about it until I got home.But what you said makes perfect sense....she was probably discussing fibroid position.

As far as being ready for a hyst, I totally agree with you - Is anyone ever really ready? I'm waiting to see if the problems I have are fibroid related, or if I am just placing the blame on them.
I am not anemic from blood loss, just very tired all the time. My back & hips ache constantly and I urinate frequently. My periods are heavy one month, then the next month I don't have one.
Hopefully the u/s will tell us what's going on and then I can start researching to see what my options are.

When you have a chance (and if you don't mind sharing) could you tell me about your experience with fibroids? Seems like talking with others who are where I am is always very educational.

Thank you again !! I wish you the best of luck also !

Hugs,
Michelle

p.s. I have 4 daughters -so maintaining my fertility is not a big concern.

You'll have a much better picture of what's going on! Just relax and wait for the results.

For me, it was a 2-step process: a) you drink a lot of water and they do the ultras. externally, then you get to jump up and go pee. Then they do it internally. The radiologisit, in my case, writes a report and gets it to the gyno. (She was watching a cyst on my right ovary, which was functional and dissolved...that was last October). But they can tell the size of the uterus, size of fibroids, enometrial lining thickness. It is a very good diagnostic tool, and definitely your next step, in my own humble opinion.

I'm asking for another ultra this WEEK as I have appt. with gyn next Monday and I think it would be good to do, as I'm on Day 15 of my period and am passing clots bigtime.

I also had a D&C with hysterscopy last July, another good diagnostic procedure where a tissue sample is taken and analyzed. I had good news on that front.

Get the ultrasound done and you'll have a much better idea of where you stand.

Good luck, good luck to all of us on this particular board. I am in such angst.

Nancym

Hi Nancym,
Thank you !! Your post is very helpful.

I'm looking forward to the ultrasound and dreading it at the same time. LOL. One good thing is I don't have to wait for the results...a tech does the u/s in my Gyns office, then I see the Dr. right after to go over the results. Hopefully it will be good news.

You poor thing - 15 days of bleeding - I can't even imagine. I hope you get some relief soon. Please let me know how your upcoming ultrasound & Dr. visit go. I will be sending you lots of well wishes !

Good luck to you too and as you said to everyone on this board.

Hugs,
Michelle