Anyone have Asherman's syndrome?

socialwkrsweetie

Hi ladies! Hope all is well! I've been lurking like crazy and following all my favorites... Keep growing! Just have a quick question and hopefully I'm in the right place. Feel free to direct me elsewhere if you think I could get better answers somewhere else! So, since my last MMC in July I have yet to have a proper period.  Basically the first time, about 45 days after the D&C I had some brown spotting, about 3 hours of red spotting and then brown again for a day. It lasted tops, three days.  Called my OB who said to give it a little more time.  After 90 days I was put on Provera for 7 days. Again, brown, red, brown spotting.  Never using more than a liner.  Had some cramping but nothing came of it.  Called the OB again.  He said he thought my lupus had shut my ovaries down and wanted me to take estrogen for three weeks and provera for 7 days. Consulted with my RE who agreed with the assessment. I just completed that over a week ago and again the brown, red, brown pattern started again but this time more discomfort and cramps but nothing was passing.  I have a call into my OB because I'm definitely concerned that I have Asherman's or some type of scar tissue from the two back to back D&Cs this year.  I know it's super rare but the lack of period or flow, the abdominal discomfort and the D&Cs have just made me a little freaked out. With us getting ready to hopefully start IVF # 1 in the spring, I really don't want to wait and then find out we have MORE issues to resolve. Just wondering if anyone else has had this experience and how your doctor treated it? My understanding from Dr. Google is that they go in and do surgery to remove the scar tissue and then they put you on hormones to help rebuild the lining. Thanks so much!

socialwkrsweetie

Hi Rosie! Lots of hugs to you!!! Thanks for responding! I just talked to my OB and he said he doesn't think there's anything major going on but I told him I would feel better if at least they did a SHG. I'm due for one anyway through the RE. He thought that would be a good idea and that way we know what we are dealing with. Just waiting to hear back from the RE to schedule. Since they like to do it with your period, I am not sure how they plan on making that work. My OB agreed that giving me more hormones before we know what's going on isn't the greatest idea with my history of blood clots.  I'll keep you posted! 

pkaren

Hi! (And Hi Rosie!! )  Your issues definitely sound similar to mine for sure! After my D&C I would feel like I was having AF, but nothing would happen. I didn't have any spotting whatsoever. I would just get crampy roughly every 30 days, get hopeful, then nada. I was given a round of Provera and the same thing happened again. So After 5 months and no more options, my OB said the only way to find out what's going on in there is to actually go in and look. I had been doing my own research and was pretty much convinced I had scar tissue.  I was right. When I went in for the surgery, they found scar tissue covering my cervix completely. My OB never used the term Ashermans, but cervical stenosis. I'm not sure what the difference is. So she removed the scar tissue that was there and didn't give me any hormones, just told me to wait for AF and set a f/u appt for a few weeks later. Sure enough, about 30 days from my last phantom AF, I got AF for reals. I happy danced in the bathroom at work! I was cleared to TTC then and it took awhile for my cycle to regulate, but about 5 months after that got KU with my now almost 4 month old. Other than the round of provera, I never took any other hormones.

From what I understand about scar tissue is that depending on where it is, it can cause different issues. I had zero flow bc my cervix was completely covered, but if you have scare tissue anywhere in your ute, the lining won't build up enough to have a real flow and this could be the light spotting that you're seeing.

I'm not sure if I answered any questions, so let me know if you have any other questions! And feel free to PM me!

PinkCamino

I got this diagnosis in October. I had my scars removed last week. If you want to talk about it PM me okay?

socialwkrsweetie

@pkaren and @PinkCamino I will send you both PMs when I get home tonight from work. Thank you so much for responding!  And @RosiePeare! 

nrcross

I am sorry to hear that you are going through this. I had my Asherman's diagnoses in May of this year. In order to diagnose they did a Saline Sonogram. Not the most comfortable thing, but not horrible. I ended up having a hysteroscopy in July and another hysteroscropy and laparoscopy in September. They had to do two because my body absorbed the saline solution they use too fast (I guess another rare situation). The recovery time for each surgery was pretty fast and I had to take hormones for a month after each. I also had a balloon catheter in for a week I believe. I was told to wait one month after the last surgery and then we could ttc again. I hope this information is helpful. 

precious72381

I had asherman's syndrome after my miscarriage and D&C in December. I had zero symptoms and no idea. I had changed RE's after my miscarriage and the new RE wanted to do an SIS (ultrasound with saline solution) in April. I almost refused because my body seemed to go back to "normal" after the miscarriage so quickly and all seemed fine to me. The test, although not so expensive in comparison to the fertility treatments, seemed like a waste of money to me. I only spotted for about 2-3 days after my D&C and didn't bleed at all prior to it. I got my period like clockwork after too (although the first one was very painful and  very heavy - unlike what you are experiencing). But I finally agreed because this new RE didn't feel comfortable doing another IVF in June until this was cleared. I thought she was after more money, but I was wrong. Sure enough, I had a thin line of scar tissue going from one corner of my uterus to the other. Not a huge amount of scar tissue but enough for it to be a concern. I was set up for a hysteroscopy the next morning (I was weeks away from starting the next IVF and hoping to be healed in time so we rushed into getting it done right away). I was told depending on what she saw in my uterus during the surgery, would determine if it was real bad I would need another D&C but luckily all I needed was the hysteroscopy. I had one previously (so I knew what to expect) and IVFs and the D&C so surgeries do not worry me at all - so I had no fear of that. I was put out and woke up a few hours later. I did have a balloon put in my uterus and a catheter connected to the balloon to deflate it in my vag. That was not comfortable. The catheter would slip out and I would have to push it back in. I had to wear that for a week. She felt very confident that everything was cleaned out at the hysteroscopy that she did not need to repeat the SIS. I had to take hormone meds, I think estrogen (estrodial) and progesterone for some time (don't remember how long - maybe a week or two to build back up the lining while the balloon was there to prevent the scar tissue from growing back - made the lining grow faster and thicker before scar tissue grew back and the balloon prevented in from growing across again if it did grow back). That was at the beginning of April. I was good to go for my June IVF. However, I got my period at the end of April, on time and got pregnant on my own the very next cycle. No idea how much the cleaning me out and meds to thicken my lining contributed to this, but after 3 years of trying, 3 failed IUIs and 3 IVFs we got pregnant on our own. SO that is my story about my asherman's sydnrome.I can tell you from what I read, it is really rare, like 8% or less of women get it from a D&C (I am 8 out of 100 I guess). If you want to know anything else, you can PM or ask me here. Not sure if that was helpful at all but thought I would answer your question about anyone have asherman's syndrome. 

Best of luck to you!!! I think asking your RE for the SIS is a good idea. The RE can decide if medically necessary or you can go straight for an exploratory hysteroscopy to have one less test but the SIS is very simple (only a little uncomfortable) and you are awake for it, in office and doesn't take long- 2 minutes maybe and hopefully get results immediately (if RE is doing it).It can diagnosis things like scar tissue and a polyp but my understanding hyseroscopy is needed to clear it out. If you go straight for the exploratory hysteroscopy and they find something, they should be able to take care of it while they are there. So one less procedure but a more difficult one since you are put out (usually) and all that. I hope you get some answers soon and FX crossed for a successful IVF in the spring. Again, been through that a few times too if you wanted to chat more.

socialwkrsweetie

@nrcross and @precious72381 I've actually had the saline ultrasound last year. You guys are right, a bit uncomfortable but nothing crazy.  I spoke to the REs nurse and she said they could probably get me in either this week or before Christmas so we know what's going on.  My OB was concerned about going straight to an exploratory hyseroscopy and I would rather avoid that if it is unnecessary. We are fortunate that in MA our fertility expenses are covered with my insurance or I would have had the same thoughts as you @precious72381! Since we have already been benched because of my lupus flaring earlier this year, I really don't want to lose time waiting if something is wrong. After my first MMC in March I had the heaviest period of my life, looking back I probably should have called the OB and told them what was going on. It ended up being fine and we got PG right away with a medicated cycle. This most recent MMC just hasn't been the same. They are chalking it up to my lupus shutting my ovaries down but the pressure and comfortableness I am experiencing now, this most recent cycle, makes me think it's something more.  

socialwkrsweetie

One other question, ladies, did you find that you had issues with IC during your pregnancies due to the combos of D&Cs and then follow up surgery? I was reading that all that dilation can weaken the cervix which makes me a bit nervous as well. Like there isn't enough to worry about PgAL. 

precious72381

socialwkrsweetie - Good luck at your appointment! Hope you get in before Christmas and get some answers!!!!

As far as IC, see my signature! I was not diagnosed with that because I never had preterm labor but was diagnosed with a shortening cervix at 19 weeks and put on complete bed rest at 21w (will be here another 2w when I will be 36w). My high risk doctor that monitored this believes it is possible from my D&C and surgeries however my OBGYN is not so sure that would have caused this. So who knows! Can't change it now. I do know that if I have another pregnancy, my cervix will be checked much earlier on and may need a cerclage. The high risk felt it was too late and too high of a risk by the time I was put on bed rest. I think everything done to my body contributed. What I don't know or understand is if my body had more time to recover, if this would still had been the result or if the damage was already done and nothing would change that. But guess I will never know!

Serenla

Sorry no advice just (((hugs)))

jap618

I was dx with it after my sonohysterogram in November.  I am having a hysteroscopy Jan 13 to try and remove all of the scar tissue!  PM me if you want to talk more about it  

nrcross

My RE did not say anything about increased risk of IC. I am only 10 weeks into my pregnancy since the surgeries. I hope you get answers soon.

socialwkrsweetie

Ladies, you are amazing! Thanks for all the info!