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Ablation and bicornuate uterus Ablation and bicornuate uterus

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Unread 01-28-2015, 12:26 AM
Ablation and bicornuate uterus

Good evening (morning) everyone. I'll try to keep this short. I had an ablation in Msy 2012 for heavy bleeding that was causing severe anemia. Prior to this (April 2012) I had a hysteroscopy and several polyps removed. I've had continual pain since. At this point it is every day--not excruciating all the time, but constant, and at times...seemingly random times...nearly unbearable. I have been to the ER a few times since with no answers, was once told I likely had a cyst rupture and given some pain meds, other occasions just sent home to deal. I was able to get into my doctors office one of the times the pain was particularly bad (March 2014). After many tests all that was found was a small cyst, but they did a lap as they thought there was a possibility I had ovarian torsion. They removed the cyst, along with my Fallopian tubes, which were very inflamed. This did not solve my pain issues either. The last time I went to the ER, I was there for 7 hours. I did not receive anything for pain or a diagnosis, but did have an ultrasound. During the US, the tech asked if I'd had any children ( I've had 2). She asked if I'd ever been told I had a bicornuate uterus-- I hadn't. I find it very hard to believe that the 2 doctors who delivered my children (the first being my current GP and a doctor I greatly trust and respect) and the 3rd doctor who is my current gyn, who has given me 3 hysteroscopies, 2 laps, many ultrasounds and many exams, would never have mentioned this.

My questions presently: Is an ablation generally recommended for someone with a bicornuate uterus? I've been scouring the web and couldn't find anything specific to bicornuate uterine ablation, but many mentions of ablation not being recommended for anyone with a generally abnormal shape uterus. My other question is, is it possible I didn't have a bicornuate uterus before, but now somehow do? Or that something else was amiss that could make the uterus look odd on the US? Maybe I'm grasping at straws here, but I just want to feel better. Anyone have a similar experience , or any knowledge/advice? Anything would be appreciated. Thank you all for listening.

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Unread 01-28-2015, 10:56 AM
Re: Ablation and bicornuate uterus

Regan...this is a VERY common phenomenon to have happen. I've had the same thing since my ablation.

I also had an ablation done in 2010 and ONLY after the ablation, did they find this "bicornuate uterus" which did NOT exist prior to the ablation as shown on all of my records and I also had a child and hysteroscopy, polypectomy, D&C etc as well as having had a normal vaginal delivery birth of my daughter. I questioned this silly. Finally, my newest gynecologist responded that it's the "scarring of the uterus from the ablation that has caused the distortion and not to worry as true bicornuate uteruses are birth defects and there from the beginning. It's very common to see this after and ablation."
Sadly, so is the pain.

I can't be sure but, what I've read about most often is that the ablation *can* scar over the cervix/stick walls of the uterus together so that it doesn't allow and blood or fluid that builds up in the uterus to exit. In some cases, they've had a procedure to open the walls and drain the uterus of fluid. I, of course, can't be sure that's the cause of your pain but, it's one that I've read about many times.

There are endometrial ablation boards in other sites that talk about this and had I known then what I know now...I wouldn't have had the ablation done (for me, personally). Some women have GREAT success with them...others, like myself..not so much.

But, do mention that idea to your doc.

I hope this helps somehow/somewhat?
Unread 01-29-2015, 01:43 AM
Re: Ablation and bicornuate uterus

Thanks so much for your response. I've read about a lot of the possible after effects of ablation, and mine sort of fit and sort of don't. The ablation did greatly lessen my bleeding, but did not stop it. Although exams are painful, it hasn't been a problem for the examiner to perform the exam so I'm guessing my cervix is not scarred over. My doctor has dismissed pretty much everything--it can't be post ablation syndrome as I didn't have my tubes tied during or before the ablation-- it isn't adenomyosis as they saw no evidence of that. Her offered diagnoses now is possible microscopic endo that they just have not been able to find during any test/lap (which she also has no suggestion for treatment of). She went so far as to suggest that I am imagining it. This was after I broke down in her office, telling her how much this was impacting my life and that I was starting to experience some anxiety from it. Guess I shouldn't have even mentioned that part. I know I need a second opinion, am just unsure of where to try at this point. Your doctor told you not to worry about it? Are they doing anything for your pain/have any plans for further treatment? Do you have the constant moderate pain and random miserable pain too ? Best wishes to you.

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Unread 01-29-2015, 12:08 PM
Re: Ablation and bicornuate uterus

Hmmm...Danielle, it's sounding like what I've experienced with doctors too. When you tell them that you aren't feeling well and that it's impacting you emotionally and they can't find an answer...they leap to "it's all in your head" type of response. I've been labelled as "neurotic" when I've had issues that they can't explain via any other means. I'm so sorry. It's horrid to "not be believed" isn't it?

I had pain for the first year or so post ablation. It didn't go much beyond that. Mind you...I have had so many biopsies now that I can only imagine that perhaps, they opened a passage??? I know that the doctor told me that my "walls were stuck together" while doing a Sonohysterogram. Oddly enough, after extending my uterus with the saline to do the test and inserting the tube to do so, my pain disappeared. So, what happened there...I have NO idea and honestly...neither do 3 gynecologists.

Right now, my main problem is that, like you, the ablation didn't stop my lining from growing back either. I'm 58 and still not in menopause but, don't produce enough progesterone anymore to create a "shed" of that lining. I have to be given it via pill form for 2 weeks every 3 months and have a rather nasty shedding. It's not pleasant to say the least.

However, having said that about my case, I do remember reading that Provera (medroxyprogesterone acetate), is also given for endometriosis. So, if your doc has put it down to "microscopic endo" then, you might benefit from some sort of treatment like Provera for it???

I have had 3 gynecologists now. I've been passed around like a hot potato that no one wants. None of the 3 agree on what to do with me because, like you, no one really knows what is going on with me either. It isn't the pain for me but, how to deal with this non-menopausal state and lining at my age. However, I am with one gynecologist now who is the mid-road between "rip it out" and "do nothing". Two of the 3 do not believe I need a hysterectomy but, this one knows that I have to shed the lining so, I'm following her orders right now as dreadful as the treatment can be.

In your case, I really do believe that you need another opinion at the least. Are there other gynecologists that you can see? Have you spoken to your family physician about getting another opinion since this one doesn't know what's going on? She/he will likely have collegues that they can refer you to. Ask friends who they go to. There HAS to be another gynecologist that you can be seen by, if only to get that opinion.

But, you asked a question about ablation in a bicornuate uterus. NO...they generally don't do them from my understanding on a uterus like this. BUT...here's some thoughts beyond my experience with being told the same thing AFTER the ablation and years of exams that showed no signs of it.
I would think that your doctors...especially, the one who did the ablation, would have SEEN this situation while doing the procedure and during those lap exams. And it would have been difficult for you to have had 2 children (as I was told about my situation and finally had dismissed as the result of the ablation scarring and distorting the uterus). So, the idea of a bicornuate uterus going undetected would have to be gross negligence on their parts were that to have been the case PRIOR to the ablation. So, I highly doubt it was the case. I think your uterus has been distorted by scar tissues and THAT may be the cause of your pain???

Have you had a Sonohysterogram done since your ablation? (That's where they insert a tubing into the uterus and put some saline in to distend the walls, then ultrasound....really not more than a cramping feeling but, they tell you to take Ibuprofen prior to the test to help this and afterwards). I'm wondering if the distortion of the uterus/scar tissue now is the cause of that pain?

But, I did want to say that you had your tube removed and the cervix isn't just exterior, it goes up in a channel like formation. Even the walls could be sticking together with adhesions or just "stuck together" like mine.

Honestly, I'd get another gynecological opinion at this point. I think yours is doing the best she can but, simply doesn't know. Another doctor may have another opinion/another patient with the same type of scenario and know what to look for.

And, one last mention here of what helped me. I started seeing a Chiropractor. I know it sounds insane and unrelated BUT...he has been able to show me that pain can be "referred pain" from nerves running down the lower spine area and through to the uterine area, making it FEEL like it's coming from the uterus. Honestly. He's proven it to me by doing his thing (acupressure, machines, manipulations etc..) and having the pain go. When it flares up again, another round of treatments and it goes. You might want to consider TRYING one to see what he/she has to say as well. It can't hurt you. What have you got to lose?

I know how upsetting this is to feel like you're going "crazy" but, know that you're not. My heart goes out to you and I'm still here for you to talk things out. I know how horrid this all feels.

Unread 01-29-2015, 08:44 PM
Re: Ablation and bicornuate uterus

Oh Loveachuckle, thank you so much for your info and understanding! It is maddening when you can't figure out what's wrong, your doc brushes it off and your friends just don't get it. There are times when I'm not feeling too poorly that I think "Hey, maybe there really IS nothing wrong"--then I have days like the last few that remind me that's NOT true. My cousin's wife and a close friend both had an ablation done and had no ill effects whatsoever. The former telling me it was a "piece of cake", and the latter strolling across the street to my house with a drink in her hand 2 days later. I woke up in agony, and was miserable and mostly bedridden for 4 days, and it was 2 weeks before I felt somewhat normal. An acquaintance suggested I must have a very low pain tolerance--I don't think that's the case. With my first child I had preeclampsia. I was induced on a Monday morning and she was born at 1:08 a.m. Friday. Granted, not all of that time was hard labor, but I held off until very shortly before she was born to get an epidural, which didn't kick in until afterwards anyway. At it's worst, this pain rivals and sometimes eclipses that.

I had the ablation when I was 32, my doctor told me I could try birth control to see if that would help, but only until I was 35 (I smoke and there is a very high incidence of heart disease in my family). She told me this 3 weeks before my 35th birthday. I don't even know when I'm supposed to go back to see her now, they informed me last time that new guidelines suggest a pap is only necessary every 2-3 years now--do they want me to wait that long? I don't know. There is only one women's clinic here, and my fear is that if I see another doctor in that clinic (I think there are 3 others), they will just defer to whatever my current gyn says. There are doctors in another slightly larger city about 2 hours away and that is probably where I will end up going, but I didn't have much luck asking the opinions of friends. Barely any of them saw the same doctor, and they are all basing their opinions on a routine checkup as none of them have had any issues. I will likely just have to pick one and go for it.

I have considered seeing my primary physician who delivered my daughter before the women's clinic here opened--I so wish he still did ob/gyn! He was my 2nd choice doctor. My first had no bedside manner and my ob appointments that I was taking time off work 35 miles away to go to were lasting 5 minutes or less. Being pregnant for the first time, I wanted a little more info than "see you next time". He also neglected to mention my high blood pressure throughout my pregnancy. That is kind of how my current gyn is. Very few details, looks good to me, not sure what that could be, see ya next time. I can handle and WANT all the gory details, no matter how mundane they may seem. After not getting crap for information at my visits, I asked for my records and was excited to finally be able to have some info--it was nothing but visit dates and basic results (UA negative for infection type stuff).

I too highly doubt that 3 doctors and many techs would have failed to mention or notice a bicornuate uterus. I think I will try to see my GP and even if he doesn't have any advice, he can at least tell me if the abnormal shape is new.

It sounds as though you've been through quite an ordeal, I wish you the best and hope that everything will be sorted out for you soon! Again, thanks so much for your reply, it's nice to be reminded I'm not crazy and reading your post was a bright spot in my day

Unread 01-29-2015, 09:33 PM
Re: Ablation and bicornuate uterus

Oh Danielle...I have to hug you with a cyber hug. I so wish that I had the answers for you but, I do know one thing. You are NOT "nuts"!

I didn't do well post surgically either. I wouldn't have been walking across the street 2 days later with a drink in my hand either! LOL I had at least a week of feeling tired, crampy and bleeding (more light flow). I was up and about the next day but, not far and certainly not with a drink in my hand! ROFL

As for your labor...OMG...you poor thing! That must have been horrible! So, NO...you are not a "sissy"! Not by a long shot. I wasn't induced nor, did I have pre-eclampsia but, I had a LONG labor too. Started early on the Thursday around noon and delivered on the Saturday morning just after midnight. Same as you, I had NO epidural until she had crowned and I begged them to NOT give it to me at that point (really could have used it HOURS before and didn't need it at that point...idiots!) So...NO....you are not low on pain tolerance. And, let's put it this way...how many women walk around with pain and say..."oh...it's ok that i have this pain and no one knows what's causing...I can tolerate it"? That's insane! No one walks around with unexplained pain even if they can bear it! Nonsense to that theory.

Whatever is causing this...there's a reason. There's a physiological reason. Maybe, it's not all uterine related? Maybe, it's bowel related? Maybe, it's back related? Maybe it's any number of things but, SOMEONE HAS to get to the bottom of it, find it and take care of it. You shouldn't have to live this way. That's like saying..."so...you have a headache most of the time...deal with it or...you're imagining it.". Yeah, right. Just because they haven't found the source yet, doesn't mean you simply have a vivid imagination. They just can't find the source...YET (operative word here..."yet").

And, you're right, visits to these docs nowadays is like a waste of time. They do upteen tests and give you the results or not and say..."don't know...see ya in a few months...NEXT" as though they just hope that whatever is going on, will go away on its own??? I hear you. I completely can empathize with you on this because I go through the same thing. No answers, more confusion and ANXIETY (big time) because no one "knows" or even discusses it with me.

By the way, as bad as it is, I smoke too. I'm also overweight by a significant amount and have done everything from Weight Watchers to liquid diets like Oprah. I've lost 3 people over the past few years but, it comes right back again. The point behind me telling you this is that I also have a multi-nodular goiter (thyroid) that they keep biopsying, testing and watching, saying that my levels are in that VAST range considered "normal" but, the darned thing keeps growing. They won't do anything but watch it. Meanwhile, I have all of the symptoms of being Hypothyroid and in spite of that, they won't treat it with even miniscule doses of thyroid meds because of that wide "normal range" in blood work.
And, what do I get as an answer to everything that goes wrong with me...including an ingrown toenail (not joking on this one LOL)..."quit smoking and lose weight"! Yup...that's what I hear and am ushered out the door. If I ask further questions, I'm considered "neurotic". Go figure.

This all begs the question...are WE "nuts" or are THEY brushing us off?

I'm sorry that you live so far away from a larger center/city that has proper doctors but...perhaps, it's worth the trip (even if you make it a little "vacation trip" by staying overnight with a nice dinner out) and just do it??? Maybe, just pick one and book in an appointment, taking what futile records you have at the moment with you and letting another gynecologist go over things with you? A consult is just a consult. You can decide what you wish to do afterwards. If you don't get even a hint of what MIGHT be a cause...ok...at least you've tried, right?

Whatever you decide you need to do for yourself...whatever makes you feel better...just remember...THIS IS YOUR BODY...NOT the doctor's. You have every right to know what's going on with you and why. You have every right to feel well and enjoy your life. If a doctor isn't going to go to bat for you...YOU have to go to bat for yourself. In today's world, WE have to be our own advocates. Gone are the days of the old docs who bent their minds, trying to figure things out for us. We have to push them and if they won't look further...seek out others who will. Just remember that if this were them...they'd be pushing other doctors!

HUGS...and still here!
Unread 02-28-2015, 02:54 AM
Re: Ablation and bicornuate uterus

Before I start off on my spaz attack, I want to tell you that you hit the proverbial nail on the head so hard I felt tremors! I can't find any way to copy your text whilst on my phone, but the gist of it was the "yeah I'm in pain all the time but don't know what's causing it, so I guess it's fine" or "I kind of feel like crap almost all of the time but my doctor can't figure out what it is (or doesn't try too hard to) so I guess I must just be imagining it. I'm getting so exhausted trying to explain what's going on with me lately I don't even know what to do. I lost one of my few (thought so) friends last week because she got sick of me "making ridiculous excuses...etc, etc no one has that much pain that randomly".

This has been one if those weeks that you'd just like to forget. My aunt has been in and out of the hospital. My mother is starting to scare me a little (a lot) with all of the things she's forgetting. My brand new truck, the newest vehicle I have ever owned, got wrecked. And last night my grandmother died. But amidst all of this (and I feel horrible saying this) Wednesday I had an episode that made me seriously question if life was worth living. I know that's a rotten thing to say, but this was the kind of pain that makes you question the worth of your existence. In retrospect, I can now say that the worst of it "only " lasted about 2 hours, but this was one of those mind-blistering episodes that you can't quite even describe without sounding insane. Which was the consensus when I went to the ER. I was seen rather quickly (I guess sitting on the floor in the corner of the waiting room because ya can't get into the fetal position in a plastic chair gets ya somewhere), but it went downhill from there. Once I mentioned that I've had issues with this sort of thing before, there was an. "Oh, ok" moment before I was quickly ushered out the door. Thanks for your concern...

I called my doctors office the next day-/ not a big fan of hers but wanted something--was told. "It looks like you still owe $37.24 and we can't make you an appointment until this is paid ". Pretty sure that was paid 10 times over, but ok. Called the general clinic here to try to see my GP--apparently my reasoning wasn't good enough..."you're not going to be able to see him until at least July, but if you can't provide a better reason than consult we can't schedule you". Other doctors I've tried are not taking new patients. And the icing on the cake was my hypochondriac aunt telling me that I was "really blowing things out of proportion" and there was no way it could be that bad. I just don't know where to go from here. Am I really supposed to just have 2-5 times a month where, for however short a few hours might seem , I feel like I'm in labor? Is seeing spots and passing out for brief moments just to be expected? Guess I'll try a different city next week, but losing hope...
Unread 02-28-2015, 09:42 AM
Ablation and bicornuate uterus

I too wanted to add a couple of things even though I never had an ablation. 1) A woman posted on this site of getting relief from the pain of trapped blood following her ablation by having a hysteroscopic technique that released the trapped pockets. This allowed the blood to flow and relieved her pain.
2) I had UFE after going around and around with many doctors who thought it best to remove my uterus. I did not agreement and by the time I eventually had the procedure my uterus was pretty huge. The bleeding stopped right away but UFE is a process, sometimes a long process, and sometimes my uterus feels inflamed and irritated. This might seem odd but I have calmed my enraged uterus by placing a castor oil soaked cloth on my stomach with a hot pad over it. I usually watch a movie and let it steep. I find it to be a soothing and gentle treatment. I have also used ice packs which oddly helps too. Also try arnica. Sounds strange but it's for muscles which is exactly what the uterus is.

Hoping you find a doctor to help you soon!!! All the best.

Originally Posted by why_oh_why View Post
I am sorry you both are suffering since having ablations. I will echo Loveachuckle's comments. Ablation can cause chronic pelvic pain because the blood can get trapped in the uterus and back up into the tubes due to the scarring of the lining and/or scarring of the cervix. There is a study that says that women who have an ablation before age 46 are at increased risk for hysterectomy. The study followed women for 8 years after their ablations. And this risk for hysterectomy increased each year up to that 8 year mark. For women who had an ablation before age 40, there is a 40% risk of hysterectomy. You can read the study here - http://www.ncbi.nlm.nih.gov/pubmed/19037028.

I have connected with other women who developed chronic pain after ablation. Some found some supplements to resolve the pain. Also, I know of women who developed menopausal symptoms after an ablation. It would seem reasonable for the ovaries to be affected by this procedure since the sex organs work as a system.

I hope you each find something to address this pain without having to resort to a hysterectomy and all of its after effects.

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