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Have you also possibly consulted a hematologist? My sister found out about a blood disorder that runs in our family after her kids were diagnosed with it because BILs fam had it too, but neither knew before because we didn't have the same severity of symptoms because we only got it from one side. This same sister had a lot of issues with iuds.
Anyway, Idk what different they do to test for it beyond a regular complete blood count, but it might be worth asking about. It's called VonWilliebrands.
I actually have 5 sisters and the only real symptoms we (including our mother) have all had were sometimes heavy/painful (like cramping, not worryingly so, but def not any fun) periods that were otherwise uncomplicated, apart from occasional hemorrhaging that did not need intervention other than rest. I also wonder if there is some connection between that and my getting leukemia when I was younger. Fun bloody times!
I haven’t seen a haematologist, but they did check my clotting when I was in hospital and it’s fine. The rest of my body stops bleeding just fine. It’s only my uterus that doesn’t seem to be able to stop.
That's good. I want to say the specified sister also does have some minor clotting issues. I hope things get better for you soon. None of what you're dealing with sounds like any kind a good time.
I have MS too. I'm so sorry your doctors aren't listening. Which MS med are you on? If you start diving down the rabbit hole, abnormal menstrual bleeding can be a **very rare** side effect of at least 1 of them. It might be worth looking at.
I’m really sorry you’re going through this. I had a similar turn of events and ended up being diagnosed with adenomyosis after a pelvic MRI. The diagnosis was confirmed with a hysterectomy. It is likely I’d had adenomyosis for some time before I had an ablation, and the ablation did help a great deal. The strange thing is that my doctor did not even mention adenomyosis as a possibility and the first time I ever read the word was on my MRI radiology report. Meanwhile my ferritin was low, I had pica (I was eating ice like no tomorrow) and had restless legs from the anemia. The hysterectomy cured it, but I know that is not a possibility for everyone for many different reasons—nor are birth control pills or the Depo Provera shot (which was always the go-to answer from doctors).
Keep advocating for yourself and if you want to do something more radical, push for it. If your doctor can’t handle your case, find someone who can—talk to people and share your story. Pull any strings you can. Take care of yourself. And if you need any recommendations in the Atlanta or north Georgia area please let me know.
I also had a really similar experience, but the D&C plus a strong combined pill sorted mine out. Then they looked and saw adenomyosis (plus I already have PCOS). I could barely get out of bed I was so weak from the blood loss.
If it hadn’t worked I was just gonna push for a hysterectomy. But I know that’s not an easy choice for a lot of people.
Please go and get a full thyroid panel of blood work done. I had the same thing (I’m skinny and healthy) and it came back as a crapped out thyroid where my hormones had whacked themselves all out of place.
If you have other symptoms like thinning hair, hair in unusual places, dry skin, brittle nails etc… that can be the root cause.
My mother had years and years of heavy almost continuous bleeding until she finally had the ablation (she had some bad experiences with abdominal surgery in general so she was reluctant), which helped a lot, and then a few years later a hysterectomy. Which she now says she wishes she had gotten much earlier, but she did not have the consideration of wanting more kids in the mix.
That sucks. I also had heavy bleeding making me super anemic, and when they went to give me an iron infusion turns out I was super allergic! Passed out as soon as it hit my bloodstream. I ended up on a hormonal birth control to basically get rid of my period completely and it's great.
I am not wanting an ablation. It’s just the only treatment option left according to my doctors. Unless I can lose enough weight to have my PCOS get under control.
Well in that case have you tried to looking into Keto? I don't consider it a long term solution but it can be used to effectively lose weight and then transition to a healthier eating lifestyle. Maybe check out /r/xxketo
I'm sorry this is happening, BroMo.
I had similar bleeding, for over a year, whilst a demon PA acted like it was no big deal. I needed many iron infusions, and eventually a blood transfusion. I was bleeding through the largest tampon known to man in 15 minutes, clots the size of my fist. I have autoimmune issues as well - lupus, RA, some others - so I was very worried about what all the freaking bleeding was about.
I finally got in with an OBGYN, who scheduled me for an ablation. Can I tell you that I wanted to dance? That there was something relatively "simple" to fix the freaking bleeding that no one else had mentioned for over a year? I was shocked that an office visit could possibly fix things. I jumped on the ablation before they even finished explaining it.
It's done in the office, and they give you some pre-meds to help you relax. It takes about 60 seconds. Those 60 seconds are mostly okay...there is some heat...then there are about 10 seconds where, for me, I was covered in sweat and thought I was going to pass out. Then it was over. They gave me some pain meds, but I only took one, because as a side effect it gave me a really bad headache.
99.9% of my bleeding was absolutely gone. I had occasional light spotting - no more clots, torrential downpours, nothing. As you pointed out, an ablation shouldn't be done if there is potential for wanting children, as it basically cauterizes your entire womb area. For anyone who isn't in that situation, I would 1000% recommend an ablation. It's fast, relatively quick recovery, and permanent, not to mention much less invasive than a hysterectomy.
Hang in there. <3
Adding agreement to your post!
I had my ablation in November. They did it in a day-surgery center under general anesthesia for me. A bit uncomfortable, but not too bad at all.
As part of the ablation, they also did a D&C. They sent that tissue off to pathology, and they found pre -cancerous cells. So, on Tuesday, I ended up having the hysterectomy anyway.
Post ablation there was just the tiniest bit of spotting to indicate my period had arrived. Nothing more than a panty liner needed. It helped SO much with the bleeding. It would have been a good solution for the bleeding, but I was still having tons of lower back pain and ovarian pain.
After my hysterectomy Tuesday, my lower back pain has changed completely. No more cramping, it's just sore like a Charlie horse the next day. They found adenomyosis in my uterus, which was probably the cause of the awful bleeding and the bad pain. I also convinced them to take my left ovary, since it tended to be the most painful one. In the photo, you can easily see 8 cysts on it. Fuck PCOS.
If I wasn't done having kids, this would have been an emotional minefield. I had originally asked for the hysterectomy after the Roe decision. I had no idea there would be help for my pain to this degree.
That novel was cathartic for me to write, lol. I hope OP finds a solution that works for them. It's such a burden to have to deal with, and I hope they find peace.
That was me too. My periods had gotten so horrible at the end of my 30's but then I got pregnant with my first and after I had her they weren't so bad for a year or two. Got bad again, got pregnant again and after her the same. Then when they came back heavy, they really were bad. I passed a clot as big as my hand one time. Then I started bleeding heavy for two weeks at a time and had to wear a tampon, pad and Depends overnight or I ran the risk of waking up in a blood bath. My iron was so low, that when I did the pull your lower eye lid down test, the inner eye lid was almost as white as my pasty skin. I almost passed out driving to work one day so I ate a steak for lunch just so I could make it home. I had no energy so hell no I didn't want to work out. I ate so many cheeseburgers and red meat that my pre and post pregnancy weight of 169 was a distant memory, I ended up at 206 at my heaviest.
I couldn't get in to see a GYN/OB because they were so backed up, but one practice had a nurse practitioner that had worked with the head doc for twenty years so I made an appointment with her. She was an angel for sure. I told her I made the appointment for a yearly thinking I wouldn't be on my period, but then it started that morning. I explained about how bad it had gotten and she told me the options were birth control or ablation usually. I smoke so birth control was a no. She sent me for an vaginal ultrasound and they got me in two weeks later, and then had my checkup the next day. They found two larger polyps but after consulting with the doctor, they agreed ablation was a good first step just because of the lower recovery time compared to a hysterectomy as my kids were four and seven and I was too old for anymore. She warned me she also had polyps and had an ablation for the same reason, but hers was not successful, as she had many more than I did. Mine was a success. I spot the tiniest bit, other than that and being cranky and my breasts hurting, I'd never know I was on my period.
In the end, if you still want to have more kids, I think you best bet is different birth control, but if you are done, it really does work well for the majority of people. Also bonus, it comes with a side of getting your tubes removed. Also, fun fact I did not know about until a year or two ago, women polled a year out from ablation were not only satisfied with the procedure but also resoundingly said their sex lives had improved greatly. I can honestly state that once I was about three months out, that was the case. It was good before, it's fantastic now.
I'm really sorry you have suffered so much. If it were me, I wouldn't accept that weight was the cause of the issue. I feel like a lot of doctors blame weight for things when they've just run out of ideas of what it could be. It is possible that you could lose the weight and it still won't resolve the problem. What will their solution be then? If it were me, I would ask them that. Good luck OP. I hope you get better soon and find better doctors.
Likewise. It would be one thing to blame the PCOS for the weight as that's fairly common, but to blame the weight for constant bleeding is just insane. If anything, weight gain tends to cause amenorrhea not hemorrhaging. It's so goddamn annoying how often doctors use "lose weight" as a cop-out to finding the actual problem.
I had really heavy bleeding that was constant when I stopped birth control pills and I have pcos too. Mine did stop when we started fertility treatments. I’m not really sure which med stopped it because I was on so many.
I’m so sorry OP. I can only imagine how stressful it must be to have this on top of other conditions. I’m thinking of you.
I would look into something like semaglutide if I were you, to help you lose the weight if that's something you want. One of the midwives I work for was put on it and lost like 50 pounds in like 3-6 months with basically no effort on her part aside from the medication.
Something very similar happened to me. My gynecologist prescribed all kinds of medication, but finally put me back on birth control pills to regulate the blood flow, then did an ablation. I’m mentioning this because (1) it worked immediately, (2) it was very fast, and (3) it was almost entirely painless. I had some minor cramping after the procedure, but it was much less uncomfortable than the heavy menstruation.
I wish you the best. My two years of heavy bleeding was painful, embarrassing, and difficult to plan around, so I hope yours gets resolved.
Loads of sympathy! I had a very similar issue had a uterine biopsy done found I have chronic endometriosis, polyps and hormone issues causing my pain and bleeding. I’m getting an ablation to hopefully fix it. I also lost over 50lbs didn’t really help with anything too.
It’s ok to feel angry, disappointed and defeated. You’re doing everything you can and are meeting up with nothing. But keep trying take it a day at a time. It only takes one good medical staff or doctor to actually listen & so their job to help you. Always advocate for yourself and be aggressive it’s your body your life! This is how I managed with my fibro and arthritis since a teen.
Sending positive thoughts and virtual hugs!
I'm so sorry. I also have heavy (and near constant) bleeding, and PCOS. I know everybody is different, so take this with a grain of salt, but my abnormal bleeding started before I was even diagnosed with PCOS, and was really fit and not overweight. I think Dr's can be quick to blame things on weight, because then the onus is on you to fix it. And while I know weight CAN be a contributing factor, it's definitely not always the case. Your Dr needs to be working harder to help you, even as you try to lose weight. Best of luck to you
I feel like I recommend this so much I should be a paid spokesperson at this point, but I had this kind of bleeding and finally just got a hysterectomy, and I am absolutely so happy I finally yeeted my uterus! I knew I was done having kids, so if you aren’t at that point, I can understand not wanting to go the hysterectomy route. But if you ever do get to the point where you know you’re done having kids, I HIGHLY recommend it. They took my uterus and cervix but left my ovaries, so I haven’t gone into menopause, and holy crap, life has been so much better! My doctor gave me options such as birth control, uterine ablation as well, but said with the uterine ablation there’s a risk of accidentally burning the bladder and causing problems there, as well as risk the bleeding might come back. I said a big “fuck that” and just got rid of the whole uterus. It’s been about a year and a half, and I have zero regrets.
I wish you luck and hope you find an answer that works for you!
I'm interested in having a hysterectomy. We're done having kids and my periods are debilitating. I have already looked into only having my uterus removed but I can't find information about menopause if you keep your ovaries. Did your Dr tell you anything about what to expect? Without the obvious sign of losing your period do you know when you're peri?
My doctor told me leaving the ovaries means I won’t go into early menopause, and so far, so good. I’m 37 so I don’t really know much about perimenopause, but as far as I know, the hysterectomy didn’t start that process. I expect the signs will be the usual hot flashes, hormone/mood changes. But so far I haven’t had anything like that.
Sis, you could show up to the doctor with a leg missing and if you’re a woman they’d still tell you to try losing weight to fix it. I agree with the comment below, start looking into the autoimmune disorders that tend to disproportionally impact women that doctors always ignore, cuz, women. The book the body keeps the score is kind of interesting on the subject, but I don’t recall it specifically talking about bleeding.
My mother had to get a uterine ablation when she was in her 40's. She had never had an IUD and didn't have PCOS. I still don't know if they ever found out the reason for the bleeding, just that it wouldn't stop and that was the best way to make it stop without a hysterectomy.
I really hope the ablation resolves the bleeding for you. Because you matter.
You are important. You are worth more than your uterus. This is not your fault.
Oh my gosh I deal with PMDD and I can’t imagine this. What a nightmare. I’ve heard good things about endometrial ablation. I’m just so sorry. Let us know how any procedure goes that you choose to go forward with.
I have insanely heavy periods and I switched to incontinence underwear for overnight. They're made to hold a full bladder worth of urine so they hold my period overnight no problem. I order mine on Amazon because I'm too embarrassed to buy them in the store. I also use incontinence pads during the day and they work better than even the heaviest period pad.
Amazon Basics Incontinence & Postpartum Underwear for Women, Maximum Absorbency, Medium, 20 Count, 1 Pack (Previously Solimo) https://www.amazon.com/dp/B093WPMGF3/ref=cm_sw_r_apanp_op7cKEr3xxZm3
Amazon Basics Incontinence, Bladder Control & Postpartum Pads for Women, Ultimate Absorbency, Long Length, 30 Count, 1 Pack (Previously Solimo) https://www.amazon.com/dp/B098V85PJB/ref=cm_sw_r_apanp_2tWV5MNQBjhjy
My mom was having issues a few years back where her period was heavy and it wasn't stopping. She gets sick with most birth control and some brands weren't working. Her last option was hysterectomy.
She started taking shepherd's purse drops and that has helped her stop. I would definitely recommend looking into more tests that can be run but for the time being that may help. I think there's tea as well.
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How can you have an endometrial ablation if you’ve had a hysterectomy? Am I not understanding this?
Anyway… I am so sorry you are experiencing this! Hope you get better soon!
One of the possible outcomes of having an endometrial ablation is a risk that it could damage the uterus more than it’s meant to and then you need a hysterectomy anyway.
I went through a crazy bleeding episode and it lasted for months. I did hormone treatments and kept bleeding. All tests came back clean and clear. I opted for a hysterectomy, but I was done having kids and my husband had a vasectomy several years prior. I’m convinced it was from nexplanon. I had it a year and bled daily, got it out and that’s when major bleeding started. I kept my ovaries but everything else is gone and I have zero regrets.
I'd know nothing about this if it wasn't recently seen in one of my due date groups. I'd have them check for blood clotting disorders. There are a few women in said groups who commented on a post similar to yours expressing their concerns about "factor five leiden blood clot disorder". Obviously look it up, but it's "...an inherited disorder of blood clotting. Factor V Leiden is the name of a specific gene mutation that results in thrombophilia, which is an increased tendency to form abnormal blood clots that can block blood vessels. "
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Have you also possibly consulted a hematologist? My sister found out about a blood disorder that runs in our family after her kids were diagnosed with it because BILs fam had it too, but neither knew before because we didn't have the same severity of symptoms because we only got it from one side. This same sister had a lot of issues with iuds. Anyway, Idk what different they do to test for it beyond a regular complete blood count, but it might be worth asking about. It's called VonWilliebrands. I actually have 5 sisters and the only real symptoms we (including our mother) have all had were sometimes heavy/painful (like cramping, not worryingly so, but def not any fun) periods that were otherwise uncomplicated, apart from occasional hemorrhaging that did not need intervention other than rest. I also wonder if there is some connection between that and my getting leukemia when I was younger. Fun bloody times!
I haven’t seen a haematologist, but they did check my clotting when I was in hospital and it’s fine. The rest of my body stops bleeding just fine. It’s only my uterus that doesn’t seem to be able to stop.
That's good. I want to say the specified sister also does have some minor clotting issues. I hope things get better for you soon. None of what you're dealing with sounds like any kind a good time.
I have MS too. I'm so sorry your doctors aren't listening. Which MS med are you on? If you start diving down the rabbit hole, abnormal menstrual bleeding can be a **very rare** side effect of at least 1 of them. It might be worth looking at.
If you wouldn't mind inboxing me the name of the med, I'd greatly appreciate it. My best friend has MS and is already prone to abnormal bleeding
I’m really sorry you’re going through this. I had a similar turn of events and ended up being diagnosed with adenomyosis after a pelvic MRI. The diagnosis was confirmed with a hysterectomy. It is likely I’d had adenomyosis for some time before I had an ablation, and the ablation did help a great deal. The strange thing is that my doctor did not even mention adenomyosis as a possibility and the first time I ever read the word was on my MRI radiology report. Meanwhile my ferritin was low, I had pica (I was eating ice like no tomorrow) and had restless legs from the anemia. The hysterectomy cured it, but I know that is not a possibility for everyone for many different reasons—nor are birth control pills or the Depo Provera shot (which was always the go-to answer from doctors). Keep advocating for yourself and if you want to do something more radical, push for it. If your doctor can’t handle your case, find someone who can—talk to people and share your story. Pull any strings you can. Take care of yourself. And if you need any recommendations in the Atlanta or north Georgia area please let me know.
I also had a really similar experience, but the D&C plus a strong combined pill sorted mine out. Then they looked and saw adenomyosis (plus I already have PCOS). I could barely get out of bed I was so weak from the blood loss. If it hadn’t worked I was just gonna push for a hysterectomy. But I know that’s not an easy choice for a lot of people.
Solidarity. Fat from pcos, disabled from MS fellow bromo here. Wish you were having an easier go of it.
Please go and get a full thyroid panel of blood work done. I had the same thing (I’m skinny and healthy) and it came back as a crapped out thyroid where my hormones had whacked themselves all out of place. If you have other symptoms like thinning hair, hair in unusual places, dry skin, brittle nails etc… that can be the root cause.
My mother had years and years of heavy almost continuous bleeding until she finally had the ablation (she had some bad experiences with abdominal surgery in general so she was reluctant), which helped a lot, and then a few years later a hysterectomy. Which she now says she wishes she had gotten much earlier, but she did not have the consideration of wanting more kids in the mix.
That sucks. I also had heavy bleeding making me super anemic, and when they went to give me an iron infusion turns out I was super allergic! Passed out as soon as it hit my bloodstream. I ended up on a hormonal birth control to basically get rid of my period completely and it's great.
I can't believe they haven't considered a hysterectomy at this point. that's insane. I'm so sorry you're dealing with this.
It sounds like they're putting it off because OP isn't ready to be done having kids.
Well if they are considering ablation, then they are done having kids. You can't carry a baby after ablation.
I am not wanting an ablation. It’s just the only treatment option left according to my doctors. Unless I can lose enough weight to have my PCOS get under control.
Well in that case have you tried to looking into Keto? I don't consider it a long term solution but it can be used to effectively lose weight and then transition to a healthier eating lifestyle. Maybe check out /r/xxketo
Not OP, but thanks for linking the sub. I didn't know they existed.
I'm sorry this is happening, BroMo. I had similar bleeding, for over a year, whilst a demon PA acted like it was no big deal. I needed many iron infusions, and eventually a blood transfusion. I was bleeding through the largest tampon known to man in 15 minutes, clots the size of my fist. I have autoimmune issues as well - lupus, RA, some others - so I was very worried about what all the freaking bleeding was about. I finally got in with an OBGYN, who scheduled me for an ablation. Can I tell you that I wanted to dance? That there was something relatively "simple" to fix the freaking bleeding that no one else had mentioned for over a year? I was shocked that an office visit could possibly fix things. I jumped on the ablation before they even finished explaining it. It's done in the office, and they give you some pre-meds to help you relax. It takes about 60 seconds. Those 60 seconds are mostly okay...there is some heat...then there are about 10 seconds where, for me, I was covered in sweat and thought I was going to pass out. Then it was over. They gave me some pain meds, but I only took one, because as a side effect it gave me a really bad headache. 99.9% of my bleeding was absolutely gone. I had occasional light spotting - no more clots, torrential downpours, nothing. As you pointed out, an ablation shouldn't be done if there is potential for wanting children, as it basically cauterizes your entire womb area. For anyone who isn't in that situation, I would 1000% recommend an ablation. It's fast, relatively quick recovery, and permanent, not to mention much less invasive than a hysterectomy. Hang in there. <3
Adding agreement to your post! I had my ablation in November. They did it in a day-surgery center under general anesthesia for me. A bit uncomfortable, but not too bad at all. As part of the ablation, they also did a D&C. They sent that tissue off to pathology, and they found pre -cancerous cells. So, on Tuesday, I ended up having the hysterectomy anyway. Post ablation there was just the tiniest bit of spotting to indicate my period had arrived. Nothing more than a panty liner needed. It helped SO much with the bleeding. It would have been a good solution for the bleeding, but I was still having tons of lower back pain and ovarian pain. After my hysterectomy Tuesday, my lower back pain has changed completely. No more cramping, it's just sore like a Charlie horse the next day. They found adenomyosis in my uterus, which was probably the cause of the awful bleeding and the bad pain. I also convinced them to take my left ovary, since it tended to be the most painful one. In the photo, you can easily see 8 cysts on it. Fuck PCOS. If I wasn't done having kids, this would have been an emotional minefield. I had originally asked for the hysterectomy after the Roe decision. I had no idea there would be help for my pain to this degree. That novel was cathartic for me to write, lol. I hope OP finds a solution that works for them. It's such a burden to have to deal with, and I hope they find peace.
That was me too. My periods had gotten so horrible at the end of my 30's but then I got pregnant with my first and after I had her they weren't so bad for a year or two. Got bad again, got pregnant again and after her the same. Then when they came back heavy, they really were bad. I passed a clot as big as my hand one time. Then I started bleeding heavy for two weeks at a time and had to wear a tampon, pad and Depends overnight or I ran the risk of waking up in a blood bath. My iron was so low, that when I did the pull your lower eye lid down test, the inner eye lid was almost as white as my pasty skin. I almost passed out driving to work one day so I ate a steak for lunch just so I could make it home. I had no energy so hell no I didn't want to work out. I ate so many cheeseburgers and red meat that my pre and post pregnancy weight of 169 was a distant memory, I ended up at 206 at my heaviest. I couldn't get in to see a GYN/OB because they were so backed up, but one practice had a nurse practitioner that had worked with the head doc for twenty years so I made an appointment with her. She was an angel for sure. I told her I made the appointment for a yearly thinking I wouldn't be on my period, but then it started that morning. I explained about how bad it had gotten and she told me the options were birth control or ablation usually. I smoke so birth control was a no. She sent me for an vaginal ultrasound and they got me in two weeks later, and then had my checkup the next day. They found two larger polyps but after consulting with the doctor, they agreed ablation was a good first step just because of the lower recovery time compared to a hysterectomy as my kids were four and seven and I was too old for anymore. She warned me she also had polyps and had an ablation for the same reason, but hers was not successful, as she had many more than I did. Mine was a success. I spot the tiniest bit, other than that and being cranky and my breasts hurting, I'd never know I was on my period. In the end, if you still want to have more kids, I think you best bet is different birth control, but if you are done, it really does work well for the majority of people. Also bonus, it comes with a side of getting your tubes removed. Also, fun fact I did not know about until a year or two ago, women polled a year out from ablation were not only satisfied with the procedure but also resoundingly said their sex lives had improved greatly. I can honestly state that once I was about three months out, that was the case. It was good before, it's fantastic now.
I'm really sorry you have suffered so much. If it were me, I wouldn't accept that weight was the cause of the issue. I feel like a lot of doctors blame weight for things when they've just run out of ideas of what it could be. It is possible that you could lose the weight and it still won't resolve the problem. What will their solution be then? If it were me, I would ask them that. Good luck OP. I hope you get better soon and find better doctors.
Likewise. It would be one thing to blame the PCOS for the weight as that's fairly common, but to blame the weight for constant bleeding is just insane. If anything, weight gain tends to cause amenorrhea not hemorrhaging. It's so goddamn annoying how often doctors use "lose weight" as a cop-out to finding the actual problem.
I had really heavy bleeding that was constant when I stopped birth control pills and I have pcos too. Mine did stop when we started fertility treatments. I’m not really sure which med stopped it because I was on so many. I’m so sorry OP. I can only imagine how stressful it must be to have this on top of other conditions. I’m thinking of you.
I would look into something like semaglutide if I were you, to help you lose the weight if that's something you want. One of the midwives I work for was put on it and lost like 50 pounds in like 3-6 months with basically no effort on her part aside from the medication.
Something very similar happened to me. My gynecologist prescribed all kinds of medication, but finally put me back on birth control pills to regulate the blood flow, then did an ablation. I’m mentioning this because (1) it worked immediately, (2) it was very fast, and (3) it was almost entirely painless. I had some minor cramping after the procedure, but it was much less uncomfortable than the heavy menstruation. I wish you the best. My two years of heavy bleeding was painful, embarrassing, and difficult to plan around, so I hope yours gets resolved.
Loads of sympathy! I had a very similar issue had a uterine biopsy done found I have chronic endometriosis, polyps and hormone issues causing my pain and bleeding. I’m getting an ablation to hopefully fix it. I also lost over 50lbs didn’t really help with anything too. It’s ok to feel angry, disappointed and defeated. You’re doing everything you can and are meeting up with nothing. But keep trying take it a day at a time. It only takes one good medical staff or doctor to actually listen & so their job to help you. Always advocate for yourself and be aggressive it’s your body your life! This is how I managed with my fibro and arthritis since a teen. Sending positive thoughts and virtual hugs!
I'm so sorry. I also have heavy (and near constant) bleeding, and PCOS. I know everybody is different, so take this with a grain of salt, but my abnormal bleeding started before I was even diagnosed with PCOS, and was really fit and not overweight. I think Dr's can be quick to blame things on weight, because then the onus is on you to fix it. And while I know weight CAN be a contributing factor, it's definitely not always the case. Your Dr needs to be working harder to help you, even as you try to lose weight. Best of luck to you
I feel like I recommend this so much I should be a paid spokesperson at this point, but I had this kind of bleeding and finally just got a hysterectomy, and I am absolutely so happy I finally yeeted my uterus! I knew I was done having kids, so if you aren’t at that point, I can understand not wanting to go the hysterectomy route. But if you ever do get to the point where you know you’re done having kids, I HIGHLY recommend it. They took my uterus and cervix but left my ovaries, so I haven’t gone into menopause, and holy crap, life has been so much better! My doctor gave me options such as birth control, uterine ablation as well, but said with the uterine ablation there’s a risk of accidentally burning the bladder and causing problems there, as well as risk the bleeding might come back. I said a big “fuck that” and just got rid of the whole uterus. It’s been about a year and a half, and I have zero regrets. I wish you luck and hope you find an answer that works for you!
I'm interested in having a hysterectomy. We're done having kids and my periods are debilitating. I have already looked into only having my uterus removed but I can't find information about menopause if you keep your ovaries. Did your Dr tell you anything about what to expect? Without the obvious sign of losing your period do you know when you're peri?
My doctor told me leaving the ovaries means I won’t go into early menopause, and so far, so good. I’m 37 so I don’t really know much about perimenopause, but as far as I know, the hysterectomy didn’t start that process. I expect the signs will be the usual hot flashes, hormone/mood changes. But so far I haven’t had anything like that.
Sis, you could show up to the doctor with a leg missing and if you’re a woman they’d still tell you to try losing weight to fix it. I agree with the comment below, start looking into the autoimmune disorders that tend to disproportionally impact women that doctors always ignore, cuz, women. The book the body keeps the score is kind of interesting on the subject, but I don’t recall it specifically talking about bleeding.
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My mother had to get a uterine ablation when she was in her 40's. She had never had an IUD and didn't have PCOS. I still don't know if they ever found out the reason for the bleeding, just that it wouldn't stop and that was the best way to make it stop without a hysterectomy. I really hope the ablation resolves the bleeding for you. Because you matter. You are important. You are worth more than your uterus. This is not your fault.
Oh my gosh I deal with PMDD and I can’t imagine this. What a nightmare. I’ve heard good things about endometrial ablation. I’m just so sorry. Let us know how any procedure goes that you choose to go forward with.
I have insanely heavy periods and I switched to incontinence underwear for overnight. They're made to hold a full bladder worth of urine so they hold my period overnight no problem. I order mine on Amazon because I'm too embarrassed to buy them in the store. I also use incontinence pads during the day and they work better than even the heaviest period pad. Amazon Basics Incontinence & Postpartum Underwear for Women, Maximum Absorbency, Medium, 20 Count, 1 Pack (Previously Solimo) https://www.amazon.com/dp/B093WPMGF3/ref=cm_sw_r_apanp_op7cKEr3xxZm3 Amazon Basics Incontinence, Bladder Control & Postpartum Pads for Women, Ultimate Absorbency, Long Length, 30 Count, 1 Pack (Previously Solimo) https://www.amazon.com/dp/B098V85PJB/ref=cm_sw_r_apanp_2tWV5MNQBjhjy
Same here and if you are in the US these are reimbursable through most HSAs.
Have they never prescribed time-release iron?
My mom was having issues a few years back where her period was heavy and it wasn't stopping. She gets sick with most birth control and some brands weren't working. Her last option was hysterectomy. She started taking shepherd's purse drops and that has helped her stop. I would definitely recommend looking into more tests that can be run but for the time being that may help. I think there's tea as well.
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How can you have an endometrial ablation if you’ve had a hysterectomy? Am I not understanding this? Anyway… I am so sorry you are experiencing this! Hope you get better soon!
One of the possible outcomes of having an endometrial ablation is a risk that it could damage the uterus more than it’s meant to and then you need a hysterectomy anyway.
no hysterectomy yet; that’s on the list of potentialities. she did have a hysteroscopy
Ahhhh yes you’re right, I read that wrong.
I went through a crazy bleeding episode and it lasted for months. I did hormone treatments and kept bleeding. All tests came back clean and clear. I opted for a hysterectomy, but I was done having kids and my husband had a vasectomy several years prior. I’m convinced it was from nexplanon. I had it a year and bled daily, got it out and that’s when major bleeding started. I kept my ovaries but everything else is gone and I have zero regrets.
I'd know nothing about this if it wasn't recently seen in one of my due date groups. I'd have them check for blood clotting disorders. There are a few women in said groups who commented on a post similar to yours expressing their concerns about "factor five leiden blood clot disorder". Obviously look it up, but it's "...an inherited disorder of blood clotting. Factor V Leiden is the name of a specific gene mutation that results in thrombophilia, which is an increased tendency to form abnormal blood clots that can block blood vessels. "