Hysterectomy experiences

[Demon]

I think for me, at the moment, what is causing me the most anxiety is the not knowing. I thought I was in the clear with a benign biopsy but I am still bleeding daily. I am on high doses of Progesterone. So the bleeding should have stopped. The fact that it hasn't concerns me that perhaps the biopsy missed something which is quite possible as the endometrial biopsy is only a small area. Unfortunately with the holidays upon us my gynecologist is not in the office. So I have to wait til next month. Eight months bleeding and cramping and I am ready for answers and for a solution. I am glad you are doing well and that your surgery went well.

That is an insane amount of time for that to go on. And now another month? Anyone you're comfortable seeing for a second opinion? You'll still be waiting, but that's a really long time to go without a solution. What a horrible thing to go through. I hope for a solution for you soon!

 

[Piper70]

I had a vaginal hysterectomy in 2012 at 44. I had a lemon sized slow growing fibroid and then another went from zero to walnut sized in 1 year. They caused heavy painful periods so I was happy to have it done. I still have ovaries but cervix was removed. I can’t remember why but it was a game time decision ( doctor said he would make the decision while in there whether to remove it or not ). It was an easy recovery and no issues after.
Good luck!!

 

[marcy]

@missy I had a complete hysterectomy about 31 years ago - I had endometriosis. My ovaries turned out to be the size of large grapefruits and one ovary had grown to my appendix so they removed it as well. I had a 6 week recovery period where I couldn't lift anything over 5 pounds and was restricted from bending over. I didn't have much post surgery pain and definitely felt better in the long run.

 

[Snowdrop13]

Are you still on hormone treatment @missy? Is that thought to be causing the bleeding? I’m just wondering, maybe stop it for a while to see if that helps? Might avoid the need for surgery.

 

[Missy]

Are you still on hormone treatment @missy? Is that thought to be causing the bleeding? I’m just wondering, maybe stop it for a while to see if that helps? Might avoid the need for surgery.

Thanks Snowdrop, yes that is my next step after I force a uterine lining shed. Which I am not looking forward to. I am planning after this week (busy week and the forced shed will be very painful) to stop my Progesterone for 7 days thereby forcing my uterine lining to shed. In the hopes of resetting my uterus so to speak. If that doesn't work the step after that is to stop all of it and see if the bleeding stops. If it doesn't then I am going for another ultrasound.

It's been a long journey. The reason I feel stopping it all won't help is I am on very strong P injections that suppress the lining and the only reason I can think of why that wouldn't be working is that there are rogue cells there in the lining that won't respond to those medications. Under 99.9% of the cases this med stops all bleeding. So the fact that it did not (I have been on it for 3 months now) is what is worrying me. Not to mention the 800 mg of daily progesterone I am on in addition. So strong injectable progestin plus high dose of bio identical progesterone equals endometrial suppression for the overwhelming majority. In fact it is overkill. But isnt working for me. As a friend of mine said (who is very well versed with HRT and even wrote an excellent book about this) it doesn't look like I am going to "endometrial suppress" my way out of this. IOW, he feels like there could be C cells in my lining that do not respond to these medications. Because normal cells would be suppressed on much lower doses. Ugh. That is my big concern. I just hope, whatever it is, is slow moving. That's my fervent wish at this time.

@missy I had a complete hysterectomy about 31 years ago - I had endometriosis. My ovaries turned out to be the size of large grapefruits and one ovary had grown to my appendix so they removed it as well. I had a 6 week recovery period where I couldn't lift anything over 5 pounds and was restricted from bending over. I didn't have much post surgery pain and definitely felt better in the long run.

I am glad yours went well @marcy and wow what a bear (haha) that had to be. Glad it is past you and you feel better for it. Thank you for sharing.

I had a vaginal hysterectomy in 2012 at 44. I had a lemon sized slow growing fibroid and then another went from zero to walnut sized in 1 year. They caused heavy painful periods so I was happy to have it done. I still have ovaries but cervix was removed. I can’t remember why but it was a game time decision ( doctor said he would make the decision while in there whether to remove it or not ). It was an easy recovery and no issues after.
Good luck!!

@Piper70 glad it went well and vaginal seems to be the least invasive but not sure that is an option for me. Thank you for sharing.

That is an insane amount of time for that to go on. And now another month? Anyone you're comfortable seeing for a second opinion? You'll still be waiting, but that's a really long time to go without a solution. What a horrible thing to go through. I hope for a solution for you soon!

It's a big problem here. The pandemic has caused a shortage of good doctors. In fact, many are no longer accepting new patients. Including my gynecologist. I just started seeing her last December so exactly one year ago. And a few months later she stopped accepting any new patients. All the gynecologists here have stopped accepting new patients.

This past Friday afternoon I received a recommendation from a good friend for a gynecologist in the city (approximately 2 hours away) who while older (mid to late 70s) is supposedly excellent. But the initial cost is $1250 and he accepts no insurance. That really aggravates me as that is just the initial. Who knows what the followups cost. Not saying I won't see him and I have to call to see his availability but I wouldn't say he is better than my gynecologist who accepts insurance. But he is an option. If he feels something is wrong he is going to suggest a biopsy which I already had. I think what I would ideally want to do is a D&C and from that they can biopsy a larger tissue sample to see if there are indeed C cells there. But I want my gynecologist to do it as she is good in technique and the biopsy that many say is brutally painful wasn't too bad with her. So yeah it is a factor for me. The skill of the doctor doing the procedure and the fact that she knows me. And then the cost. I mean isnt that crazy? $1,250??? Greg is like let's go it doesn't matter but I cannot say he is better than my doctor and the trip in is also a huge hassle. But it is an option. I have two things I want to do before I make an appointment about this. I want to do a forced shed which will take about 7-10 days and then I want to stop everything and see what happens.

Thanks again everyone for your helpful input and advice. I really appreciate it. It helps me think more clearly hearing your suggestions and thoughts. Thank you!

 

[lulu_ma]

Sorry just saw this. Big hugs to you @missy .

Not much to add except my mom had a hysterectomy when she was 50 because of heavy, painful periods. I was in college at the time so I didn't see her until about 4 weeks post op. She was so happy and working out daily. She seemed really relieved.
She's almost 80 now.

​

 

[Tonks]

@missy I am so sorry you are having to deal with this.

I have not had a hysterectomy.

My advice, however, comes from having been in pelvic floor physical therapy. I am stunned we don’t recommend this to more women. I would highly recommend that you find a good pelvic floor PT in your area and visit both before and after your surgery. Before, so that she can help answer some of these questions and guide you as to what may be best in your situation (pelvic floor PTs are uniquely situated to do this because they are the ones helping with the rehab).

I would also recommend visiting afterward so that she can help you with your recovery. The pelvic area is just like any other area of the body and we would go to PT for a post-op knee, ankle, or shoulder.

 

[luvmysparklies]

Thanks Snowdrop, yes that is my next step after I force a uterine lining shed. Which I am not looking forward to. I am planning after this week (busy week and the forced shed will be very painful) to stop my Progesterone for 7 days thereby forcing my uterine lining to shed. In the hopes of resetting my uterus so to speak. If that doesn't work the step after that is to stop all of it and see if the bleeding stops. If it doesn't then I am going for another ultrasound.

It's been a long journey. The reason I feel stopping it all won't help is I am on very strong P injections that suppress the lining and the only reason I can think of why that wouldn't be working is that there are rogue cells there in the lining that won't respond to those medications. Under 99.9% of the cases this med stops all bleeding. So the fact that it did not (I have been on it for 3 months now) is what is worrying me. Not to mention the 800 mg of daily progesterone I am on in addition. So strong injectable progestin plus high dose of bio identical progesterone equals endometrial suppression for the overwhelming majority. In fact it is overkill. But isnt working for me. As a friend of mine said (who is very well versed with HRT and even wrote an excellent book about this) it doesn't look like I am going to "endometrial suppress" my way out of this. IOW, he feels like there could be C cells in my lining that do not respond to these medications. Because normal cells would be suppressed on much lower doses. Ugh. That is my big concern. I just hope, whatever it is, is slow moving. That's my fervent wish at this time.




I am glad yours went well @marcy and wow what a bear (haha) that had to be. Glad it is past you and you feel better for it. Thank you for sharing.






@Piper70 glad it went well and vaginal seems to be the least invasive but not sure that is an option for me. Thank you for sharing.




It's a big problem here. The pandemic has caused a shortage of good doctors. In fact, many are no longer accepting new patients. Including my gynecologist. I just started seeing her last December so exactly one year ago. And a few months later she stopped accepting any new patients. All the gynecologists here have stopped accepting new patients.

This past Friday afternoon I received a recommendation from a good friend for a gynecologist in the city (approximately 2 hours away) who while older (mid to late 70s) is supposedly excellent. But the initial cost is $1250 and he accepts no insurance. That really aggravates me as that is just the initial. Who knows what the followups cost. Not saying I won't see him and I have to call to see his availability but I wouldn't say he is better than my gynecologist who accepts insurance. But he is an option. If he feels something is wrong he is going to suggest a biopsy which I already had. I think what I would ideally want to do is a D&C and from that they can biopsy a larger tissue sample to see if there are indeed C cells there. But I want my gynecologist to do it as she is good in technique and the biopsy that many say is brutally painful wasn't too bad with her. So yeah it is a factor for me. The skill of the doctor doing the procedure and the fact that she knows me. And then the cost. I mean isnt that crazy? $1,250??? Greg is like let's go it doesn't matter but I cannot say he is better than my doctor and the trip in is also a huge hassle. But it is an option. I have two things I want to do before I make an appointment about this. I want to do a forced shed which will take about 7-10 days and then I want to stop everything and see what happens.

Thanks again everyone for your helpful input and advice. I really appreciate it. It helps me think more clearly hearing your suggestions and thoughts. Thank you!

@missy
Missy, about the D&C. Hang on a minute!!! If you suspect that there might be C, look at it this way. Your body is strong and containing this just where it is! There is a chance that with all that scraping, that the very barrier that is keeping this in one place could allow it to move (spread) elsewhere with disastrous effects. I am going to give key words to search for a YT video of a woman who was also a physician--that wanted to document for all women what she went through as she was unfortunately dying. I won't put the actual video here because I don't want to trigger. The D&C she got, caused spread. Now, her issue had to do with her taking the pill, but I want you to seriously consider about this D&C.

You have gone way too long just bleeding and bleeding. I mean, how are you feeling? Are you weak? Dizzy? You are going to be in transfusion territory at some point! I am really trying to be very careful about what information I post because I am not trying to engender fear or give any misinformation, especially with something this serious! So, warning to all, while this is a very sad video, (at the end, I was crying) but Missy and my other sisters out here going through female health issues--this woman is giving important information that underscores the way women's health issues are given short shrift and having catastrophic effects.

I am loathe to suggest other vitamins, because I don't know what counterindications they may have on what you are already taking. But, if after you research for your own situation Missy, I would put out there that maybe you should explore whether or not taking Vitron C would help. Not for the bleeding, but for rebuilding your blood.

I have no qualms about suggesting foods though. I would like for you to start incorporating beets into each of your meals. Not in a can or jar, but from the produce section. Beets will help tremendously in building your red blood cells. Also, and I don't know how you feel about this, but calf liver. Organ meats also help with red blood cells. My great aunt had inoperable C and could only rely on chemo because of her advanced age. The chemo wreaked havoc on her blood cell counts. We incorporated these two foods in particular (everyday, beets and cooked liver and onions) and after a bit of time, her counts were back up. So much so, that the docs were taken aback because they had written her off. We all have to think of food as medicine. Whether you believe in God or not God, but nature, please weigh whether you will eat something if it did not come from nature.

Missy, your insurance company should have a "nurse line" where you can ask about this bleeding. They measure whether or not you are in an emergency situation by the number of pads you are going through per hour. Please, no tampons. If the insurance company nurse line can make this determination, as part of their contract with your provider, they can advocate on your behalf that you get seen sooner than later by your physician or someone covering for your doctor.

I am not sure about the man that you are considering that is a few hours away. With the commodification of just about everything in our lives, my spidey senses start tingling when I hear that a doctor does not accept insurance. To me, that translates to greed and no accountability. As women, we are already behind the 8 ball. I don't know that I would go to someone, not interested in the coordination of care that may be needed because the primary focus is cash.

Knowledge is power. In this health care delivery system we have, you must be your own self advocate. Though you may sometimes feel helpless or confused, you must overcome those feelings and re-affirm that you are in charge of YOU.

Please look up on youtube "Dr. Bernadette Tynan" Endometrial C warning signs. It will pull up the video. We are pulling for you Missy. Your life and health are of the utmost importance!!!! Sorry about the use throughout of all the exclamation points. I am not yelling, it is stemming from deep concern.

 

[Snowdrop13]

Yikes @luvmysparklies I think that’s all a bit alarmist! I do feel sorry for that poor lady but there’s a fair bit of inaccuracy in her statements and it’s only her take on what happened. A D and C is a very common option for diagnosing bleeding.

 

[luvmysparklies]

Yikes @luvmysparklies I think that’s all a bit alarmist! I do feel sorry for that poor lady but there’s a fair bit of inaccuracy in her statements and it’s only her take on what happened. A D and C is a very common option for diagnosing bleeding.

Yes it is.
However, I certainly was not trying to be alarmist. Would you mind specifying and countering the inaccuracies you noted? While I agree that this was this woman's experience, is there nothing to be gleaned that might be of help? This person is not the only person that has regretted getting a full on D&C because it resulted in spread.

Since Missy has been bleeding almost as long as a human gestational time frame, superimposed with considering a forced uterine lining shed=even more blood loss, I simply wanted to give another perspective regarding D&C and its potential (in this case, since Missy suspects C). I absolutely am not focused on scaring anyone, as I also proposed other ideas for balance. Apologies to anyone that may perceive me as having been alarmist-but I must say that it is highly alarming what Missy is going through. Since this is a very extreme situation, I thought there might be room to consider something beyond very common options.

 

[Logan Sapphire]

Hi Missy,

I had a complete hysterectomy (so cervix and Fallopian tubes gone, but not my ovaries) done open abdominally when I was 43, due to multiple fibroids- including one that was so huge, my uterus was the size of a 6 month pregnant uterus. Because of the sheer size of it, they had no choice but to take it out the old fashioned way.

I have to say, recovery was really easy for me. I had 2 nights in the hospital and almost none of the complications, thankfully. I think I took narcotics for a few days and then was fine with extra strength Tylenol.

I did find that an abdominal binder was really helpful in keeping my healing stomach feeling supported and I also got maternity pants with the fully belly panel for a bit more support. I’ll say that it took me the full three months to feel 85% back to my usual self, but I had younger kids and a dog to deal with.

I also found Hyster Sisters very helpful, but at times had to step back from it because all the horror stories were a bit anxiety-producing for me. It’s been two years now and I don’t think I’ve gone into menopause yet. Not having a period is GLORIOUS and I don’t regret it at all, but fully acknowledge I had a textbook recovery.

Wishing you good luck with your decision!

 

[HGar]

My experience from when my periods commenced at age 13 was one of heavy bleeding every month until I turned 15-16 when I would bleed pretty much constantly and then in our Summer they would disappear completely only to reappear once cold weather returned. I had ultrasounds but they could never pinpoint anything. Going on the pill at 18 was the only thing to cease the bleeding - Depo Provera, d&c’s, tubal ligation and ablation all failed. So the choice was remain on the pill until menopause or a hysterectomy.

In my case, my older sister and I have both been diagnosed as having endo, my sister’s daughter is aged 24 and she has it as bad as her Mum did (my sister had a complete hyster by the age of 43). Our younger sister has never experienced any of the same issues, neither did our Mum.

Our 16yo daughter has horrific bleeding and has had a Mirena iud put in place as well as being on the pill - it is only just keeping it in check.

My very best friend had an ablation 15 years ago and to this day has never had bleeding again. I had an ablation, started bleeding straight afterwards and didn’t stop until I went back on the pill.

My long winded point is - every female body is different. Everyone’s experience will be different. It’s fine to ask for stories but only you and your doctor can make the right decision for you. Personally I wouldn’t ask for anyones’ opinion - I trusted my doctor that after our research and experiments the operation was the best thing.

I also have a strong belief in being positive - to me dwelling on negative thoughts cannot lead to any positive action.

Take what you will but personally I think you need to find the right doctor and trust in the decision you make.

 

[Missy]

@missy
Missy, about the D&C. Hang on a minute!!! If you suspect that there might be C, look at it this way. Your body is strong and containing this just where it is! There is a chance that with all that scraping, that the very barrier that is keeping this in one place could allow it to move (spread) elsewhere with disastrous effects. I am going to give key words to search for a YT video of a woman who was also a physician--that wanted to document for all women what she went through as she was unfortunately dying. I won't put the actual video here because I don't want to trigger. The D&C she got, caused spread. Now, her issue had to do with her taking the pill, but I want you to seriously consider about this D&C.

You have gone way too long just bleeding and bleeding. I mean, how are you feeling? Are you weak? Dizzy? You are going to be in transfusion territory at some point! I am really trying to be very careful about what information I post because I am not trying to engender fear or give any misinformation, especially with something this serious! So, warning to all, while this is a very sad video, (at the end, I was crying) but Missy and my other sisters out here going through female health issues--this woman is giving important information that underscores the way women's health issues are given short shrift and having catastrophic effects.

I am loathe to suggest other vitamins, because I don't know what counterindications they may have on what you are already taking. But, if after you research for your own situation Missy, I would put out there that maybe you should explore whether or not taking Vitron C would help. Not for the bleeding, but for rebuilding your blood.

I have no qualms about suggesting foods though. I would like for you to start incorporating beets into each of your meals. Not in a can or jar, but from the produce section. Beets will help tremendously in building your red blood cells. Also, and I don't know how you feel about this, but calf liver. Organ meats also help with red blood cells. My great aunt had inoperable C and could only rely on chemo because of her advanced age. The chemo wreaked havoc on her blood cell counts. We incorporated these two foods in particular (everyday, beets and cooked liver and onions) and after a bit of time, her counts were back up. So much so, that the docs were taken aback because they had written her off. We all have to think of food as medicine. Whether you believe in God or not God, but nature, please weigh whether you will eat something if it did not come from nature.

Missy, your insurance company should have a "nurse line" where you can ask about this bleeding. They measure whether or not you are in an emergency situation by the number of pads you are going through per hour. Please, no tampons. If the insurance company nurse line can make this determination, as part of their contract with your provider, they can advocate on your behalf that you get seen sooner than later by your physician or someone covering for your doctor.

I am not sure about the man that you are considering that is a few hours away. With the commodification of just about everything in our lives, my spidey senses start tingling when I hear that a doctor does not accept insurance. To me, that translates to greed and no accountability. As women, we are already behind the 8 ball. I don't know that I would go to someone, not interested in the coordination of care that may be needed because the primary focus is cash.

Knowledge is power. In this health care delivery system we have, you must be your own self advocate. Though you may sometimes feel helpless or confused, you must overcome those feelings and re-affirm that you are in charge of YOU.

Please look up on youtube "Dr. Bernadette Tynan" Endometrial C warning signs. It will pull up the video. We are pulling for you Missy. Your life and health are of the utmost importance!!!! Sorry about the use throughout of all the exclamation points. I am not yelling, it is stemming from deep concern.

I appreciate you taking the time and energy to share this with me.
I do eat beets (love them) with dinner every day.
Maybe that is why my iron isn't low.
I have a genetic defect that causes my ferritin to be low but iron to be high and throughout the 8 months that has held steady. My iron is actually near 150 (bad) but ferritin is 18 (bad). But I am doing the best I can and take it one day at a time.

I appreciate your concern. And will google Dr Tynan. I didnt realize that a D&C could potentially spread cancer but that is definitely something to think about. And I agree with you about how as women we often get the short end of the stick with some of the medical community and I also agree with you about this doctor who not only takes no insurance (I have a few doctors who will not take insurance) but charges exorbitant fees. So only wealthy women can see him. Pisses me off TBT.

I agree food is medicine. I cannot eat meat but I do incorporate what I feel is a healthy diet each and every day and do the best I can in that department. I am also taking (too many) supplements and have to narrow it down as it is taking a toll on my liver.

I have only been using pantyliners not pads nor tampons. It isnt a lot of blood every day. It's just wiping blood and spotting all day long. At most I go through two pantyliners a day. That's it. But yeah it is disconcerting it has been going on for so long. I did my due diligence and had three ultrasounds (all normal but last one was thickened) and a biopsy. I feel a little better because I did more research and it seems a uterine biopsy is 99.2% accurate if negative.

Plus she did a hysteroscopy with the biopsy and looked at the lining with a camera inside. Very painful but she said it looked OK. Of course C is microscopic but I do feel a bit better after reading the statistics. Of course statistics are just statistics and do not apply to everyone. So I am still doing my due diligence and next month will get an ultrasound. It is a real hassle getting these doctors onboard and I am getting tired of feeling like I have to beg for decent care but I have to play the game and I am not giving up.

Again, I appreciate your well thought out post and you did not alarm me. Knowledge is power and I am grateful you care enough to take the time to post and also share your good wishes.

Thank you.

 

[Missy]

Yikes @luvmysparklies I think that’s all a bit alarmist! I do feel sorry for that poor lady but there’s a fair bit of inaccuracy in her statements and it’s only her take on what happened. A D and C is a very common option for diagnosing bleeding.

Thank you @Snowdrop13 it is reassuring knowing that D&Cs are commonly used for diagnosing. I hope I don't need to get one and hoping somehow I can sort this out. It's been a challenging time and disconcerting that I don't know why (nor do my doctors) I am bleeding but I am still hopeful I can work this out. I am still in search of an excellent physician who can help me. I am not sure I will be able to do this on my own anymore. The last 8 months have been trying and I have been to several doctors about this. But each one has been stumped. But I have two more things I am going to try and if that doesn't work I am going to have to find another professional to help. Thank you for taking the time and energy to help me.

 

[Missy]

Hi Missy,

I had a complete hysterectomy (so cervix and Fallopian tubes gone, but not my ovaries) done open abdominally when I was 43, due to multiple fibroids- including one that was so huge, my uterus was the size of a 6 month pregnant uterus. Because of the sheer size of it, they had no choice but to take it out the old fashioned way.

I have to say, recovery was really easy for me. I had 2 nights in the hospital and almost none of the complications, thankfully. I think I took narcotics for a few days and then was fine with extra strength Tylenol.

I did find that an abdominal binder was really helpful in keeping my healing stomach feeling supported and I also got maternity pants with the fully belly panel for a bit more support. I’ll say that it took me the full three months to feel 85% back to my usual self, but I had younger kids and a dog to deal with.

I also found Hyster Sisters very helpful, but at times had to step back from it because all the horror stories were a bit anxiety-producing for me. It’s been two years now and I don’t think I’ve gone into menopause yet. Not having a period is GLORIOUS and I don’t regret it at all, but fully acknowledge I had a textbook recovery.

Wishing you good luck with your decision!

Thank you for sharing your experience. If I have to get an abdominal hysterectomy it is good to hear you had a good experience. I know what you mean about reading horror stories. I have read so many and the statistics bear out that 50% of women experience prolapse so that is a big concern for me. But if I have to have a hysterectomy I will hopefully find an excellent surgeon who will minimize the risks of prolapse and other potential bad side effects. We can only do the best we can and one day at at time. Thank you for your good wishes and for sharing with me what you went through.

 

[Missy]

My experience from when my periods commenced at age 13 was one of heavy bleeding every month until I turned 15-16 when I would bleed pretty much constantly and then in our Summer they would disappear completely only to reappear once cold weather returned. I had ultrasounds but they could never pinpoint anything. Going on the pill at 18 was the only thing to cease the bleeding - Depo Provera, d&c’s, tubal ligation and ablation all failed. So the choice was remain on the pill until menopause or a hysterectomy.

In my case, my older sister and I have both been diagnosed as having endo, my sister’s daughter is aged 24 and she has it as bad as her Mum did (my sister had a complete hyster by the age of 43). Our younger sister has never experienced any of the same issues, neither did our Mum.

Our 16yo daughter has horrific bleeding and has had a Mirena iud put in place as well as being on the pill - it is only just keeping it in check.

My very best friend had an ablation 15 years ago and to this day has never had bleeding again. I had an ablation, started bleeding straight afterwards and didn’t stop until I went back on the pill.

My long winded point is - every female body is different. Everyone’s experience will be different. It’s fine to ask for stories but only you and your doctor can make the right decision for you. Personally I wouldn’t ask for anyones’ opinion - I trusted my doctor that after our research and experiments the operation was the best thing.

I also have a strong belief in being positive - to me dwelling on negative thoughts cannot lead to any positive action.

Take what you will but personally I think you need to find the right doctor and trust in the decision you make.

Thank you @Kyton and I agree being positive and hopeful is important. I am not a Pollyanna and have never been one but instead I feel I am a practical person who always hopes for the best but tries to be prepared for the worst. That is how I approach things. It allows me to process what can happen while hoping for a good outcome. I know finding an excellent surgeon is key for a good outcome.

I wouldn't consider ablation as it can hide cancer and it can also affect the other organs and cause many issues that way. I have read much about ablation and most of the women who have one go on to having to get a hysterectomy fairly soon after. I am so sorry your DD is experiencing or was experiencing lots of bleeding and am glad the Mirena is helping her. I am also sorry you went through so much personally with bleeding and I feel for you. That is hard to go through at any age but especially when one is so young. I agree we are all different and to that end we have to find what works for us. Not always an easy task and it often comes down to trial and error. I am hoping I can figure it out or can find a specialist who can figure it out with me.

Thanks again for sharing with me and all the best to you and your family.

 

[luvmysparklies]

Missy, while I am still concerned for you, I am glad and very relieved to learn that you have been dealing with spotting vs. a more heavy flow of bleeding. When I read through the posts and you mentioned ongoing bleeding for 8 months, I was worried about you having dealt with more severe blood loss. The other context for that conclusion had been from my cousin's situation and others here regarding heavy bleeding and the need for the hysterectomy. When I did not see (prior to today) that you were not having heavy bleeding--I was operating on a different premise.

When I mentioned that doc on youtube, it was from a place of me empathizing with your concerns about C and again, my earlier impression. I simply wanted you to have as much info (even if unpleasant) as possible. After reading your post today, I would like to re-affirm my agreement with Snowdrop13's statement about the D&C.

Also, I would like to circle back to my earlier statement regarding "less scarring" with the regular laproscopic procedure because I did not mean that in an insensitive way. That statement was partly in frustration with what happened to my cousin when she had the DaVinci. We had done everything we could to prepare her for the surgery and family members had organized taking turns on the when and who would keep watch and caregive. Her actual surgeon was not really available after the surgery and never followed up with her. He kept dispatching his office nurse staff to handle her concerns. It was not until she went to her PCP with a fever that he was forced to "show up for aftercare." My sentiment that she could have had less scarring had she gotten laproscopic (which was an option) had to do with the anger surrounding this lack of surgeon follow-up. I have neck scars from surgery and feel that scars represent our triumph over something.

Anyway, continuing to send positive thoughts your way! You have done a remarkable job researching and equipping yourself with knowledge as well as sharing important information with us!

 

[Demon]

Thanks Snowdrop, yes that is my next step after I force a uterine lining shed. Which I am not looking forward to. I am planning after this week (busy week and the forced shed will be very painful) to stop my Progesterone for 7 days thereby forcing my uterine lining to shed. In the hopes of resetting my uterus so to speak. If that doesn't work the step after that is to stop all of it and see if the bleeding stops. If it doesn't then I am going for another ultrasound.

It's been a long journey. The reason I feel stopping it all won't help is I am on very strong P injections that suppress the lining and the only reason I can think of why that wouldn't be working is that there are rogue cells there in the lining that won't respond to those medications. Under 99.9% of the cases this med stops all bleeding. So the fact that it did not (I have been on it for 3 months now) is what is worrying me. Not to mention the 800 mg of daily progesterone I am on in addition. So strong injectable progestin plus high dose of bio identical progesterone equals endometrial suppression for the overwhelming majority. In fact it is overkill. But isnt working for me. As a friend of mine said (who is very well versed with HRT and even wrote an excellent book about this) it doesn't look like I am going to "endometrial suppress" my way out of this. IOW, he feels like there could be C cells in my lining that do not respond to these medications. Because normal cells would be suppressed on much lower doses. Ugh. That is my big concern. I just hope, whatever it is, is slow moving. That's my fervent wish at this time.




I am glad yours went well @marcy and wow what a bear (haha) that had to be. Glad it is past you and you feel better for it. Thank you for sharing.






@Piper70 glad it went well and vaginal seems to be the least invasive but not sure that is an option for me. Thank you for sharing.




It's a big problem here. The pandemic has caused a shortage of good doctors. In fact, many are no longer accepting new patients. Including my gynecologist. I just started seeing her last December so exactly one year ago. And a few months later she stopped accepting any new patients. All the gynecologists here have stopped accepting new patients.

This past Friday afternoon I received a recommendation from a good friend for a gynecologist in the city (approximately 2 hours away) who while older (mid to late 70s) is supposedly excellent. But the initial cost is $1250 and he accepts no insurance. That really aggravates me as that is just the initial. Who knows what the followups cost. Not saying I won't see him and I have to call to see his availability but I wouldn't say he is better than my gynecologist who accepts insurance. But he is an option. If he feels something is wrong he is going to suggest a biopsy which I already had. I think what I would ideally want to do is a D&C and from that they can biopsy a larger tissue sample to see if there are indeed C cells there. But I want my gynecologist to do it as she is good in technique and the biopsy that many say is brutally painful wasn't too bad with her. So yeah it is a factor for me. The skill of the doctor doing the procedure and the fact that she knows me. And then the cost. I mean isnt that crazy? $1,250??? Greg is like let's go it doesn't matter but I cannot say he is better than my doctor and the trip in is also a huge hassle. But it is an option. I have two things I want to do before I make an appointment about this. I want to do a forced shed which will take about 7-10 days and then I want to stop everything and see what happens.

Thanks again everyone for your helpful input and advice. I really appreciate it. It helps me think more clearly hearing your suggestions and thoughts. Thank you!

Wow - doesn't accept any insurance! I was concerned most about the bleeding (my body 'forgot' one time to turn off my period, and it was a lot. Finally went in after 2 weeks and they got it stopped by some pill), but as I read farther down, you seem to be spotting and not bleeding heavily. That sounds annoying and worrying, but not the emergency I was thinking it to be. All still very concerning of course and needs to be dealt with asap. I had no prolapse at all when I had my hysterectomy. It was 11 years ago, and all still good. I think kegels help. Again, I hope for a great, quick outcome for you, and keep us updated.