StaceyYount Posted May 18, 2005 Report Share Posted May 18, 2005 Hey,I just got back from the gynecologist and she said that I have several fibroids, which I know are benign tumors. I have have been having horrible periods and pain and pain in between periods with bleeding. Got anemic and now what to do next. Her 3 suggestions were1. Endometrial biobsy ( she wanted to do that today but I just was to tired all ready)2. D & C mostly for tests3. Depo Provera4. Hysterectomy ( I can't even think of this one yet!!! )She does not want to try regular birth control pills becuase I am still mostly bed bound and it is jus a may or may not help.I did read the other topic but wondered if you guys had any new light or any suggestions.I need to do something. This pain and I think the anemia are most def. contributing to my hole. I have never had firbroids before. Did have ovarian cysts which required laproscopy in 1992.Any way any help with any of this would be appreciated. One more thing to deal with and still no definite cures jsut maybe some help. Do you think for once we could have something like a a cut and a bandaid and a kiss got it all better. Dad is home but still bad and mom is having trouble coping and I feel like I am drowning.Sorry mini vent.ANd next week I get to go to the dentist. My favorite favorite thing. Ok thank if you have any suggestions or ideas.Stacey :-) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 18, 2005 Report Share Posted May 18, 2005 StaceySo sorry about this new trouble you are having and I would think the excessive blood loss especially would be contributing to your feeling weak and unwell. Fibroids are very very common, especially in women over 30. I have one huge one. It hasn't caused me any major trouble except during delivery of Giuliana. Fibroids seem to "feed on" estrogen--they grow in response to it--and tend to grow even faster during pregnancy.I definitely think you are on the right track--seeking information to help you make a decision. Some of the options sound very drastic.You might find the book Women's Bodies, Women's Wisdom by Christine Northrup helpful (it's a book I have turned to from time to time). I don't think you'll get any definitive answers there, but some support in thinking through your options.Hopefully some others can respond who have experience with treatments for fibroids.Take care,Katherine Quote Link to comment Share on other sites More sharing options...
corina Posted May 18, 2005 Report Share Posted May 18, 2005 Stacey,I'm sorry for all this trouble you're having. I'm having heavy periods as well and at 34 diagnosed with menopause. The bleeding gives me very much trouble and being sick and tired of it I went to a gynaecologist. He offered me a hormon coil, or hysterectomie. I asked him if he could see in my hormonelevels whether the bleeding would stop soon (I'm 41 now) but he couldn't answer that. So, as my gyn, PCP and PT advised me, I had the gyn place a hormone coil which can stop the bleeding. Unfortunately my uterus is too big ( ) and the hormone coil doesn't work. I'm now having periods of about 3 weeks (although it's less, I still hate it) and a stop week, and then the "period" comes for another 3 weeks. So I'm afraid that the only option left is a hysterectomie, but my PT strongly advised me not to do that since my condition is too bad and it would take me months (?) to come back to my -25base (as she calls my condition). Since you are in bed so much, I think that your condition is bad at all and I would warn you to think very seriously before doing a hysterectomy. Also I'm very afraid of what the aneasthesia might do to me (or you). Good luck on taking a decision,Corina Quote Link to comment Share on other sites More sharing options...
sally Posted May 18, 2005 Report Share Posted May 18, 2005 Hi There are some things that can be tried depending on where your fibroids are located, how large and what type they are.for excessive bleeding there is ablation that can be done for that. Also, They can go into the uterus with a scope called a hysterscope to look at the fibroids and surgery can be performed to take out if it located on the inside of the uterus. If the fibroid is located within the wall of the uterus there is not too much else they can do surgery wise other than a hysterectomy from what I've been told anyway. Some fibroids will grow attached to the outside of the uterus as well but depending on where it is located doesn't effect the bleeding issues although it can effect the pain issue and other areas surrounding the uterus. Another thing to consider if you are having alot of bleeding and pain is Adenomysosis but this problem cannot be determined until after the hysterectomy other than diagnoses being made by clinical symptoms. And the only solution for adenomyosis is also hysterectomy or actually goign through menopause. I would say to do as much research as possible on the subject and talk again to your doctor about your options available to you maybe she/he will know other ones out there. About the endometrial biopsy, I would advise for you to have this done. It's a good way to make sure you don't have endometerial cancer going on that excessive bleeding can be a symptom of. It is not pleasant to have but necessary. They usually do it right in the office, I've had it done twice..got faint when they were performing the test but if they have no difficulty depending how the uterus is situated it's over pretty quick. here is a link for you...http://www.wdxcyber.com/dxppn011.htmbest wishes....isn't it just grand being female sometimes? Quote Link to comment Share on other sites More sharing options...
Laura Posted May 18, 2005 Report Share Posted May 18, 2005 hey Stacey! You must be feeling awful with all of this going on! We have alot of fibroids in my family, so I might be able to help a little bit. Depo Provera has worked really well for some people, shrinking the fibroids and stopping your periods. Worked wonderfully for a few people I know! The results only last while you are taking the Depo, so if you stop the fibroids are likely to grow back to original size. Good option to try out though if you are not keen on the more invasive treatments. Also this might really benifit your POTs symptoms as your hormone levels will be kept on a more regular level (as well as the anemia will stop and less fluid loss each month) Another treatment that worked out really well was to have an operative hysteroscopic resection ( removal of the fibroids with a scope- done at the doctors office) followed by an endometrial ablation. They do both proceedures during the same visit and it worked wonderfully for my aunt who had it done. She felt it was a better option for her than a hysterectomy. Of course the location, size and type of fibroid makes a difference in the treatments offered but I thought I would let you know that these treatments worked especially well in these particular situations. I have another aunt who had a fibroid the size of a grapefruit, and had to have a hysterectomy to have it removed. She obviously didn't have any other option to the hysterectomy, but that being said it also worked out well for her. Whatever you decide to do, I'm sure you'll feel alot better afterwards and maybe have a decrease to your symptoms as well! Wouldn't that be worth it! Laura Quote Link to comment Share on other sites More sharing options...
dawn Posted May 18, 2005 Report Share Posted May 18, 2005 Stacey,I had a big fibroid and was anemic for years. The best thing I ever did was have a hysterectomy. Absolutely no regrets. I was loaded with IV saline before and after surgery. Recovery was uneventful. You feel rough for a couple days but not much worse than usual. I am 49, had the procedure when I was 39.Good Luck on whatever you decide.Dawn Quote Link to comment Share on other sites More sharing options...
Gena Posted May 19, 2005 Report Share Posted May 19, 2005 Stacey,Hey girl, I know you're going through a rough time now. My thoughts and prayers are with you. I have a few fibroids too and had heavy periods that were really painful. I've listed below the things that worked for me...As another post mentioned, they feed on estrogen, so from a nutritional standpoint, if you eat meat and dairy, it's very important to eat only organic or free range meat and dairy products that have not been pumped with hormones.These hormones increase the estrogen levels in your body and feed the fibroids.Also, instead of the Provera, you may want to consider using a natural progesterone cream (that has a high percentage of progesterone in it, not just wild yam) that you rub into your skin (belly, breasts, wrists, etc.)I had a D&C that helped tremendously with the heavy periods, even though I didn't have the fibroids removed.In addition, research studies show that mushrooms like Maitake and Shiitake can actually help shrink tumors and fibroids. (If you don't eat them you can get a blend of beneficial mushrooms in supplement form). However, people with yeast sensitivities or overgrowth sometimes have crossover reactions to the fungi family, so something to be aware of).Also, I avoid caffeine, especially just before and during menstruation as this can increase the pain.You may need to try an iron supplement if you're anemic. (Floradix Iron is great)It's obviously your body and your choice, but personally speaking, I briefly considered a hysterectomy too, and was thankful I didn't go through with it. I switched my diet and did the progesterone cream. It made a HUGE difference in my symptoms. An endom. biopsy would certainly not be a bad idea either. Mine came out negative. I've had 2 D& Cs over the past 10 years and that's really helped too. Hope you find relief soon! Gena Quote Link to comment Share on other sites More sharing options...
Roselover Posted May 20, 2005 Report Share Posted May 20, 2005 Hi Stacey,I had fibroids for many years. The helps that Gena listed are good. I finally had one grow too big and had to have a hysterectomy this past November. The best thing that happened to me in the past three years (physically). I am so glad I had it. If you end up going through surgery, just be sure to print off all the info about POTS and surgery that you can find and give it to the anestheologist so they can load you up on fluids and put in an arterial monitor for BP during surgery. I actually felt the best I have felt after my surgery - POTS-wise, not the incision of course - but because of all the fluids.Hope you don't have to go to surgery, but here's one person who is glad she did - just in case you need the encouragement.~Roselover Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 20, 2005 Report Share Posted May 20, 2005 I've had all the tests you're facing. They weren't that bad...and the D&C really helped for a while. I'm about to start Lupron to stop my periods within the next few weeks.Nina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 20, 2005 Report Share Posted May 20, 2005 Oh, and my best friend had her fibroids fixed using an interventional radiological procedure--basically, the procedure clogs off the blood supply to the tumors and then the body resorbs them. Recovery time is much faster than all other methods. I share this with you b/c she suffered for many years with severe bleeding--and she felt amazing within about a week. That was a few years ago, and she's still doing great.Here's an article from the American Academy of Family Physicianshttp://www.aafp.org/afp/20000615/3601.htmlNina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 20, 2005 Report Share Posted May 20, 2005 Hi Stacey, so sorry you are going through so much. They can now remove a lot of fibroids, or as stated above, ablation seems to work really well. If you are planning on having kids, your options are more limited than if you are done with that. I had a hyst at 31 for really excessive bleeding . I kept my ovaries, so no problem with menopause or anything. I too feel like it was the smartest thing I ever did for myself. I had a few problems post op, but would do it again in a heartbeat.It's not a decision to be made without a great deal of thought however. The biopsy is a good thing to do and you should have it done while on your period, as it is less uncomfortable that way. It only lasts a minute, but it can be painful.They do have a lot of options for fibroids now they didn't use to, including laser surgery. Good luck, and I would also suggest a second opinion. You may find a doc that offers more choices. morgan Quote Link to comment Share on other sites More sharing options...
StaceyYount Posted May 20, 2005 Author Report Share Posted May 20, 2005 Thanks you guys!Will respond more later got a headache from the visit of course!! I thank you for all your responses. Stacey *:-) Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted May 22, 2005 Report Share Posted May 22, 2005 I suffered from severe periods and anemia for years due to fibroids. They tried every kind of medication/hormone, D&C, laproscopy, etc but mine just kept growing and causing problems. In 1996, I had a Myomectomy to remove the fibroids and rebuild the uterus. It is actually a more difficult surgery than a hysterectomy but it would hopefully preserve fertility. I felt good for a few years following the surgery and my periods while still heavier than most returned to a normal cycle. I don't remember the percentages, I was one of the group that grew new fibroids and in 2000 I was back and even worse than before (my last period was 90 days and they were unable to stop it with even double injections of Lupron). Back then, Lupron was just used as a temporary measure to both shrink the fibroids and stop the period to build up the blood supply before surgery. Once stopped, the periods would return. I didn't like the Lupron and my body stopped responding to it. There were other treatment options for fibroids back then and I am sure there are newer procedures available but you need to research them. Treatment options depend on the type, size and location of the fibroids. I had a hysterectomy in 2001 and it has been wonderful. Fertility was no longer an issue and I had struggled for 9 years. With the Myomectomy, recovery was I believe 3 days in the hospital and 8 weeks off work (in actuality, I was back at work after 4 weeks). With my hysterectomy, I was supposed to go home the same day (kept overnight only because the surgery was delayed in the day) and I was back to work and feeling great in about 5 days. I kept my ovaries and so far they must be working because I am 46 and still feeling fine. I had what is called a LAVH (laproscopic assisted vaginal hysterectomy) - just my uterus was removed, both ovaries were healthy so I choose to keep them and I also choose to keep my cervix. The surgery was done with three small cuts, not the bikini line cut that I had with the Myomectomy. I just wanted to write this so that you know there are options out there but it really is up to you to find a specialist and research them. Otherwise they will just recommend hysterectomy but even with that there are options availalbe. Also, the anemia made me feel awful and I don't suffer from ANS issues so I can just imagine what it would be like on top of that. Hopefully you will find something to get rid of the and get your energy back. Quote Link to comment Share on other sites More sharing options...
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