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Need advice about too much bleeding...
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12-21-2003, 08:24 PM
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Guest
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Posts: 46
Hysterectomy: August 30th, 2004
Ovaries: Undecided
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Need advice about too much bleeding...
Hello Ladies,
I am relatively new here but just reading the posts has already been so helpful. I am a 35 year old mom of two with a history of endometriosis and fibroids. My M.D. put me on continuous Yasmin bcp about 10 weeks ago to try and decrease the severe bleeding and pain I have been having with periods. Unfortunately, I started bleeding again about four weeks ago and the bleeding and pain continued to worsen. Last Thursday, the doc started me on 1.25mg of Premarin in addition to the Yasmin for ten days. The bleeding is a little better but it has not stopped and I'm getting worried. I only have six more days of medication and I wonder what's going to happen then. Have any of you experienced similar problems? Any suggestions?
I was hoping to wait until April for the Hyst as our insurance plan calendar year begins in April and we will be able to choose a plan with a lower deductable. Of course, we chose the high deductable plan last year because we didn't have any medical problems. Ha Ha... won't do that again.
A little history - I had a myomectomy for huge fibroids (10 cm) over six years ago and a second surgery three years ago to remove bilateral endometriomas, stage IV endo and adhesions. The endo had attached to the bowel but they were able to clean things up without doing a bowel resection. At that time, we wanted to have a second baby so they left everything intact so we would try to finish our family.
Now, three years later, the endo is back with a vengeance and now I have more fibroids. The largest fibroid has gron from 4cm to 6+cm in 8 months. Now that our family is complete, I am through fighting this disease and resigned myself to a hysterectomy. I just hope I don't have to have it done on an emergency basis because of all of this bleeding.
Any suggestions, ideas, etc. would be greatly appreciated!!! Emotionally, I'm a wreck but I'm not sure if it's just the pain wearing on me each day or if it's hormonally related.
Sorry this is so long,
Kellyn
myomectomy 10/97, clean up endometriomas etc. 10/00, planning on hyst '04
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12-21-2003, 08:44 PM
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HysterSister
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Posts: 241
Hysterectomy: February 9th, 2004
Surgery Type: TAH
Ovaries: Kept 1 or both
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A long response from another bleeder
I have been through the bleeding, too, and I totally empathize with you. You can read more details about my story somewhere under hysterectomy options and alternatives. It's a few weeks old so maybe you could just look it up through my profile. It's kinda long, but it tells all about the treatments I have tried.
If you really want to wait until April, you can probably be sustained on hormones, but I think that can encourage things to grow faster. I was on two Yasmin a day for a long time, but it didn't help. It may help you. I took as many as six a day. I also took three Provera a day. Those are things you may be able to try to sustain yourself until April. Oh, and some women have had tons of success with progesterone cream. It seems like an option that is worth exploring. I never tried it, but I would if I wasn't so ready for my surgery.
I am on Lupron now and it isn't that bad. It has finally slowed my bleeding. I know it is often a good choice for both endo and fibroids. It is often given in the few months before surgery to shrink things and make the procedure easier. Whatever you do, your doc will probably want to control the bleeding before the surgery to help you build up your blood supply.
I am curious about whether you have had a break from the Yasmin at all since you started it. I know that some women on continuous pills experience breakthrough bleeding that can be resolved with a placebo break for a week. Then, they have a "period" and reset the uterus. As for what to expect when you quit the premarin, I would guess that you may bleed. That is what I did any time I started to taper off of any of the hormones.
I wouldn't advise the wait if you know you need the surgery and that it is your final goal. The interim procedures and methods and office visits can all add up. So can the time off of work and the price of pads and tampons. I am very impatient to have mine done, though, so I may not be the best source of advice. Perhaps you shoudl start getting things working with a goal of April because the wait can be long at times. Have you talked to your doc about wanting to wait? Perhaps it would be good to call tomorrow and discuss the next step since you are going to come to the end of the Premarin and you are still bleeding.
Oh, and I can talk all day about emotions and anemia. Maybe we can save that for e-mail or for another day.
Nicole
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12-21-2003, 09:56 PM
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Guest
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Posts: 820
Hysterectomy: January 16th, 2001
Surgery Type: TAH
Ovaries: Removed both
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Need advice about too much bleeding...
I have read (and been told by doctors) that the birth control pills and Premarin are exactly what NOT to prescribe to women with fibroids and endometrosis. These RX's reflect the most common treatments but not the NEWEST based on the latest research.
I would suggest getting another opinion from an up to date endocrinologist. Preferrably one who is also a gynecologist, but most definitely one who specializes in women's health such as infertility or menopause. (You don't have to have either one of these problems to see one.)
New research shows that fibroids, and most likely, endometriosis are caused by hormonal imbalance of the endocrine system. (The ovaries/testes are main contributors to this system and they are NOT disposable as was previously thought.) Doctors knew this to a large degree but misinterpreted which hormones to supplement. Therefore, birth control pills became the standard form of treatment. As we all know, this didn't work for every woman but it seemed to be the only treatment most doctors tried.
Since every woman is different, it only makes sense to test your individual hormonal levels and the best way to test this is not with a one time blood test but a series of saliva test, taken over a complete cycle. (How could any doctor know what is going on in your body without this?)
Oophorectomy is serious business. Removing your ovaries can lead to all kinds of other health issues ranging from cosmetic changes to death and everything in between. Often just exchanging one set of problems for another. I know, I've been down this path.
Before you give up, why don't you try to see an endocrinologist? What have you got to lose?
At the very least, ask your doctor for copies of the latest research regarding ovaries, hormones, endocrine connection and sexual dysfunction following oophorectomy. If it's not dated 2003, ask him/her to provide you withmore current statistics and abstracts. Ask about what is being taught right NOW in med school. (Not what they learned back whenever.)
Good luck and best wishes,
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12-21-2003, 11:26 PM
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Guest
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Posts: 105
Hysterectomy: January 16th, 2004
Surgery Type: LAVH
Ovaries: Kept 1 or both
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more thoughts on bleeding/waiting
Kellyn,
I love your name! Mine is Kelly.
I found good guidelines on the Web MD website about how much bleeding is too much ("severe") bleeding, which turned out to match what both my GYN and my recent ER doctor used as guidelines:
http://my.webmd.com/content/healthwise/129/32055
On webmd.com you can look up Abnormal Uterine Bleeding as a topic in the Women's Condition Center, and browse for more info. I also like obgynworld.com. You might also use the search engine on this site to search for "bleeding."
I am in a waiting mode for my hysterectomy but it is because I lost too much blood and need to be in better shape for the surgery. I completely empathize with your medical plan financial challenge (!) and also with your wondering if your emotional state is simply due to the hormones. For a month now I have been on anywhere from 2-4 birth control pills PER DAY as a temporary measure to prevent more hemorraghing. Hopefully this will be for six or seven weeks maximum for me. I don't think I could make it till April myself! Resting (not exercising) while taking all these hormones means I basically don't even feel like me. Thank God it is temporary. The sisters on this site tell me the waiting is the hardest part.
Ironically, if I could have rushed my surgery and had it during 2003, it would have been MUCH cheaper for me ... but I had a big setback with the (hopefully last ever) episode of severe bleeding, so that pushed everything back, and that's that. I'm looking at early January. C'est la vie.
My first post, which tells you my story, is located at https://www.hystersisters.com/vb2/sho...541#post772541
My big revelation was that my heavy bleeding was not just pain and inconvenience and clothing/furniture damage -- it was causing severe anemia. You didn't mention labwork to determine your blood counts, so that might be one more thing for you to watch. Keep us posted on your progress!
nisima
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12-22-2003, 12:42 AM
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Guest
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Posts: 204
Hysterectomy: October 27th, 2003
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Need advice about too much bleeding...
Dear Kellyn,
I had my tah/bso on October 27th, the earliest I could schedule it because I needed to be off work at a convenient time. Meanwhile, my cramping and bleeding were getting worse, and I was using up sick days until I could get back to a more controllable bleed. My doctor put me on birth control daily, with no stops for the week, until I had my surgery. This greatly decreased my bleeding, although I did need to wear maxi pads at times, birth control and all. For a few months, he also put me on Premarin with the other birth control pill to adjust the lining of my uterus, as my fibroids were pushing on the walls and making me bleed more. It worked for a few months, then back to bleeding heavily, so stopped the Premarin. Gladly, everything worked out well and I am 8 weeks post-op tomorrow. Good luck!
Sheree, Tarzana, CA
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12-22-2003, 11:58 AM
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Guest
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Posts: 46
Hysterectomy: August 30th, 2004
Ovaries: Undecided
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Need advice about too much bleeding...
Nicole,
Thank you so much for your reply. It sounds like you have been through a lot!! I'm so glad the Lupron is working for you. I asked my doctor about it before he started me on the Yasmin and he didn't want to do it. I took three months of Lupron prior to my myomectomy and I LOVED it. Yes, I had hot flashes, but the pain was gone and I felt great. Keep that count up. Have they considered giving you Procrit or something similar to help you get that count up? I have not had my hemoglobin checked since this started but I'm going to have that done at my next appointment.
I have not stopped taking the Yasmin since I started it. I thought that was what they would want me to do last week but they put me on the Premarin instead. The nurse said that the Doc did NOT want me to stop the Yasmin. I think he's afraid that the bleeding may just get worse.
My other problem is that my current OB/Gyn has left his practice to teach at the local University hospital. He will still see me but I do not plan to have my surgery at a teaching hospital so I need to find a new Doc. I have an appointment with a new one Dec. 24 so we'll see what she says. I sure hope I like her. My concern is that I want someone who will remove all of the endometriosis lesions and adhesions during the surgery. The last thing I want to do is go through endo surgery again because they weren't thorough. I will also need to have either a general surgeon or a gyn Oncologist assist in case the endo has entered the bowel again.
Thank you so much for the words of encouragement and advice. After reading your post, I'm more inclined to move things up and get this over with. I would love to keep in touch.
Kellyn
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12-22-2003, 12:05 PM
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Guest
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Posts: 46
Hysterectomy: August 30th, 2004
Ovaries: Undecided
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Need advice about too much bleeding...
Lucille,
Wow, I didn't know that bcp's and Premarin were bad for the endo and fibroids. I'm going to have to do some research. As I told Nicole, I have to find a new OB/Gyn anyway so I will really check him/her out. Thanks so much for the information.
I used a reproductive endocrinologist while we were trying to have children. We even did three IVF cycles with him. I wonder if I should call him. The reproductive endocrinologist assisted with my surgery three years ago but I never even thought of contacting him now since we're not trying to have a baby.
I am trying to decide whether to have both ovaries removed or not. They have both had endometriomas removed from them before and the left one has a new endometrioma right now so it will probably have to be removed anyway. I am considering asking them to leave the right ovary if there is any way it can be saved. I have never had any pain on the right side and it may be worth the chance that they have to go back in and remove it later.
Thanks so much for the information. You have given me a lot to consider. I'd love to keep in touch.
Kellyn
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12-22-2003, 12:19 PM
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Guest
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Posts: 46
Hysterectomy: August 30th, 2004
Ovaries: Undecided
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Need advice about too much bleeding...
Kelly/nisima,
I love your name too! :0)
The information about the guidlines for bleeding is invaluable. I am definitely going to have my hemoglobin checked this week.
Have the 2-4 bcp's per day helped your bleeding? As I mentioned to Nicole, you may want to see if they can give you some Procrit to help you get your hemoglobin up. My dh is a Pharmacist who works for an Oncology practice. They frequently work with patients who have low blood counts and there are medications out there (Procrit is one of them) that can really make a difference. Dh is pretty concerned about the bleeding which is really sweet of him except he keeps saying we have to do something and I can't just make it stop. I'm going to take him with me to this appointment with the new Gyn this week.
Keep in touch,
Kellyn
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12-22-2003, 12:25 PM
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Guest
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Posts: 46
Hysterectomy: August 30th, 2004
Ovaries: Undecided
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Need advice about too much bleeding...
Sheree,
I suspect my fibroid has started pushing on the uterine wall as well. The funny thing is that I started the bcp's so I wouldn't have a heavy, long period with all that pain but the pills have actually made things worse. Although my periods were long (about 10 days) and heavy before, at least they stopped!!
Oh well, I guess you live and learn. If I had it to do over again, I would never had started the bcp's in the first place.
I bet you feel wonderful now that everything is over and you're well on the way to full recovery. Did you have a total hysterectomy or did they leave your ovaries? I'm still trying to decide. When you were on the Premarin and bcp's together did you take the Premarin continuously? I think it's strange that they only gave me enough for ten days.
I would love tokeep in touch,
Kellyn
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12-22-2003, 02:17 PM
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Guest
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Posts: 820
Hysterectomy: January 16th, 2001
Surgery Type: TAH
Ovaries: Removed both
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Need advice about too much bleeding...
Kellyn,
I would recommend keeping your ovaries if at all possible. My experience with oophorectomy has been a nightmare and I have learned a lot about these little organs since. Losing mine caused my body to go into hormone shock and I ended up with heart problems, two strokes, and all kinds of endocrine related problems. Before the surgery I was very active, very sexual and never expected any of these adverse effects. I'm petite, don't drink, do drugs or smoke so I had none of the other risk factors that they might have blamed for my post op complications. I also had low cholesterol and great bloodwork before the surgery. Now everything is a mess. My cardiologist told me about how the ovaries produce hormones that protect women from heart disease. Something the cardiologist know all about, but not information you are likely to hear from your gynecologist.
I also had vision problems following the surgery and now have to take artificial tears and put gel in my eyes at night. My Ophthalmologist told me that this is VERY COMMON among women who have had oophorectomies, tubal ligations, ovarian cyst, hysterectomies, ectopic pregnancies etc. He told me about a cousin of his who also had the hormone shock following oophorectomy which prompted him to learn even more about the condition. He told me the Ophthalmologist have been trying for years to get the OB/GYNs to listen to them but they are being ignored.
Because of the strokes, I wasn't allowed to use HRT and found out first hand how lack of estrogen can cause memory and cognitive problems. Personality changes and depression are very common in women following oophorectomies. 53% of the women polled, who had had hysterectomies reported feeling suicidal. This is because of the interruption to the endocrine system. Most women are under the impression that if they "keep" their ovaries, everything will continue to work but sadly, this is not true. Most of the ovaries "kept" fail in the following years and these women are lost in the confusion between natural menopause, surgical menopause and a medical community that really doesn't understand either. If this happens to you, you will most likely be prescribed antidepressants; 73% of all the antidepressants prescribed in this country are from gynecologist and the rest are usually from the family doctor who is where you will most likely be referred to with any post-op complications since after the initial "recovery." (After the hysterectomy, your OB/GYN will no longer be your primary doctor.) What the medical researchers have recently discovered is that the receptors in the female brain that accept the antidepressants are the same ones that accept estrogens. When you are on the antidepressants, they block the estrogen (any left or stored in the body). Since lack of estrogen is what causes the depression in the first place, this just makes matters worse.
I didn't take the antidepressants that all the doctors were trying to shove down me because I knew that wasn't the problem; sure enough when I finally got to a team of doctors that knew what the heck was going on, the first thing they gave me were the naturally compounded, bio-identical hormones and by the NEXT DAY I was feeling so much better! I could think again, do my math computations, and felt better emotionally.
However, my problems are far from over and the nerve damage from the hysterectomy is permanent and I will never again enjoy sexual relations. (This is enough to make me want the antidepressants, Ha!)
The ovaries/testes are part of the endocrine system (pituitary, thyroid, kidneys, adrenal) and when you remove them, the other parts have to try to make up the difference. This doesn't always work. The effect a hysterectomy/oophorectomy has on the thyroid is well known; this is the reason most women gain weight after the operation. (Dogs too as most of us have noticed.) Weight gain and hair loss are just about the only two side effects that the doctors tell you about because until this past year, they didn't have irrefutable medical research to back up all the other claims. Yet the hair loss and weight gain has always been evident. Although now, they are beginning to tell women that removing theovaries increases your chances of breast cancer. Still, many doctors remove them to prevent the "chance" of ovarian cancer. Statistically, they are removing a small percentage chance and replacing it with a LARGE percentage chance. (The bottom line here is that removing the ovaries reduces their chances of being sued for missed ovarian cancer. They know you can't sue them for breast cancer that may develope in later years.)
These are just some of the reasons that I tell anyone who "can't decide" whether or not to keep their ovaries to think long and hard before you sign them away. Your ovaries do so much more than store eggs. They are intended, by design, to help run your ENTIRE body. Learn all you can about them before you let someone throw them away because they cannot be replaced.
The only good decision is an INFORMED decision. Don't do what I did; learn all you can BEFORE the surgery and then if you decide it's right for you, you will know that you are making the best possible decision.
Best wishes,
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