Deciding to leave or remove a subseptum

kait3210

Hi there ladies!

I'm Kait. I've never posted here before-- and I hope I don't need your support for long . I was fortunate enough to get pregnant my first time very easily, but we lost it at 10 weeks. Somewhere along the way a doctor found that I have a short septum (just 1.2 cm, if I'm reading this paper right) in my uterus (forming a heart shape), but said it should not be a problem. Luckily the baby was attached in one of the "bumps" of the heart, which meant that it could more easily push the septum to the side as it grew. I had been getting ultrasounds more often than I think is usual because there was often bleeding (normal for misshaped uterus women). It was at one of these that the Dr found it, I was actually relieved at the time, to have a reason for the bleeding. Funny now. The loss happened after the placenta very partially detached. Then detached some more, and we couldn't find the heart anymore. During the D&C, the doctor said she could feel the septum and that it was very firm. 

Once I got my cycle back, we went to a specialist and got a 3D ultrasound. This doctor said... wait for it... I probably have a partial septum. After months waiting to see this doctor, I found this less informative than I had hoped. I had hoped she could look at my uterus and tell if it was capable of carrying a baby to term or not inside of it. I guess my expectations had been skewed somewhere along the way. She also said there is no set prescribed method for handling a *partial* septum. If it is fully divided, which they are sure mine is not, then you need surgery to remove it, but with a partial you can go either way. I'll add now that I live in Italy. A small part of me wonders if American gynecologists have a different opinion (or ANY opinion, to be more accurate). 

I've been able to find plenty of anecdotal stories both here on The Bump and elsewhere. Both from those who had it removed and couldn't say enough good things about the easy surgery and from women who found out they had a septum while pregnant and it was no issue, baby was delivered no problem. Along with those who've had multiple losses. As well as those who have experienced my biggest fear: they had their septum removed and now are having a hard time TTC. 

I'm personally very, very afraid of anything happening to my uterus. My mom lost use of hers (also misshapen) while trying to get me a sibling and I have always known that pain of wanting to have more kids and not being able, through her. So my logical brain says, the consequences of a surgery gone wrong are worse than the consequences of a pregnancy gone wrong. We could TTC again, then if we lose it again, consider the surgery more seriously. But the thought also enters my mind that if this surgical procedure is so safe and simple, am I letting my fears get in the way of the better choice which could save me the pain of another loss? I would like a big family (compared to growing up an only child) and I'll be 30 before I could _possibly_ have my first. Ignoring emotional damage, do I have time to "try out" some "high risk of miscarriage" pregnancies or should I be more aggressive? 

I've had a hard time finding real information beyond the anecdotal. Maybe I should feel special for having such a rare condition? Has anyone here had to make this decision? What did you go by to decide? Anything beyond your doctor's advice? (Or is there a Doctor on this list? Dare I dream.) Here in Italy, none of the doctors I've seen here seem willing to put forth any advice. 

So there you go. Here I am. If you have any experience or information I would be beyond grateful if you shared it! Even the antidotes . I can't make my decision based on what one other person experienced, but these stories always reveal something worth considering. 

ciao,

--Kait

DenaMaree

I don't have any advice per your condition, but am sorry your having to join us and going through such a difficult time. I will say that best results are usually from following your heart! It's so easy to over think anything/everything when if you just listen to what your heart is telling you is right will lead you down the path that is right for you!!

PinkCamino

You need to have it removed. The loss rate is nearly 90% with a septum in the uterus. If you are lucky to get into the 2nd trimester preterm labor is a huge concern.

I had mine removed in December after losing a pregnancy at 6 weeks and losing my girls at 21 weeks to incompetent cervix and preterm labor.


Please please please find a doctor who will be willing to do more testing and then remove it.

mflowers929

Welcome to the board, and sorry for your loss. I'm fairly new here myself, but it seems to be a great group of ladies, willing to support and spitball and just generally joke around with.

Given what you wrote, I would probably lean towards the surgery, but you really need to do what you think is best in your heart

PinkCamino

mflowers929 said:

Welcome to the board, and sorry for your loss. I'm fairly new here myself, but it seems to be a great group of ladies, willing to support and spitball and just generally joke around with.

Given what you wrote, I would probably lean towards the surgery, but you really need to do what you think is best in your heart

No. following your heart in this situation isn't the way to go. septums cause losses.

jlworden710

I am so sorry for your loss and you find yourself here. While I hope your stay here is short, I also hope that you offer support as well as receive it. I cannot echo enough what @pinkcamino and @petrastonegirl said....

Septums cause losses. I had the resection surgery done on April 22 after 2 consecutive losses... If I would have opted to leave the septum, I would have had a 90% chance of loss, versus an outpatient procedure, that has VERY little risk for complication which essentially gives me a 20% chance of loss. 

If you want to PM me I will more then gladly answer any of your questions about a resection... hell I will send you some pictures of the inside of my uterus if you really want to see a uterus with and without a septum!

Below is a link to a discussion that @qanda2013 was mentioning, there are a lot of grads that have typed in there so beware of any siggys and if you have any questions, please PM them so the thread does not get resurrected. https://forums.thebump.com/discussion/12256369/uterine-anomolies-other-structural-issues-share-your-experience

 

kait3210

Thank you all for your replies! I couldn't believe when I checked back how many of you had replied with your experiences of even just well wishes and condolences!

I've seen exactly 11 gynecologists the past 4 months, since deciding to start TTC (yes, I know I'm a noob, but I'm here trying to learn). That number is not counting the dozen or so residents that all squeezed into the ultrasound room when I was being discharged from the hospital after my D&C, nor the surgery team who assisted on the D&C but didn't talk to me otherwise, nor any non-gyno doctors I've seen in between. Many of these were in groups of 2 or 3, but I will still count them as individuals as there are all unique human beings. 

So, second opinion? I have so far received 0 opinions from the over 20 doctors from 4 hospitals who have looked inside my who-ha on whether I should remove the septum or leave it. This is why I am reaching out to some American peers, in hopes that back home there is more transparency and that one of you has managed to learn more than I have so far. The only line I've gotten here in Italy so far is A) "see someone more specialized" or "we have no set recommendations for a *partial* septum, you can go either way, you will have to decide". I have also had a really hard time finding facts on my own.

PinkCaminojlworden710 can I ask where you got this 90% number?  Did your doctors both tell you? This is exactly the type of information I am looking for to make this decision! 

jlworden710 you say having the septum removed has "VERY little risk for complication" do you know the risk? Are you referring to a particular method for removal? Also, thank you for linking to the uterine anomolies thread! It is useful to read so many women's experiences all in one place and leads me to believe I probably need more diagnostic testing. It also makes me scared I could have something worse than a partial septum, but that's the risk of reading medical info online

I think Italy must be opposed to giving numbers to patients. For example, I asked if I could let nature run it's course rather than have the D&C right away (and not bleed to death in the process) and my doctor told me "I'm not a mathematician". No one had told me there were blood thickeners in my IV that were the only thing preventing me from bleeding out right then, I thought I was naturally improving. I had to get my husband (who she seemed to respect as he also works in this hospital) to talk to her, then him explain to me that once I left the hospital and was off blood thickeners I would start bleeding again, and then it would only get worse as more pieces of placenta detached and ripped me open further. This is what I needed to hear, in order to know I was making the right decision to have a D&C. As it was, I was still hysterical with fear that I could lose my uterus (I know it's a small chance, but it could still happen, and what if it did?!). If I lost my fertility 100%, especially in a procedure I opted for, I would crawl into an emotional and mental hole so dark I doubt I could ever completely recover. This is why I don't just schedule the septum removal today. If I knew pregnancy with a septum has a 90% fail rate, that would make it easier to decide. If I knew 25% of women who get a septum removed never conceive again after, that would make it easier to decide (if harder to deal with the limited options that left me with). But I can't find this information. If I had to decide right now, I might as well flip a coin. 

I am following my heart. My heart says, learn more and make the decision that gives me the best chances of having a baby someday. That's the goal, after all. 

qanda2013 I did read the guidelines for this board before posting. I'm not sure where I fell off the rules, but apologies for wherever I did. I certainly would never want to offend anyone. I understand anyone on this board must be going through some hard times. I am aware that TTCAL might not be the best match, as I am not actively having baby-making sex this moment, but rather deciding how and when to do so in relation to the reason for my loss. This seemed the best available option, though maybe I was wrong. Searching for treads here on The Bump for anything related to a uterine septum I found a few stories going either way, but no mention of statistics or links to any research. Probably the most useful thing after half a day of combing old threads was a mention to a Yahoo group, who are still active and I've now joined, but they seem to have some broken links to their general info. Also, I didn't "disappear". I work. And, while I let "being" pregnant dominate my every thought, once I was not pregnant any longer, I decided I wanted to enjoy this state for all the good things it has to offer and pour myself into all the activities I didn't have the energy for (or was restricted from doing) when pregnant. This seems a better way to live than spending every moment obsessing over my infertility. It is not my fault if you got annoyed that I waited a day to check if anyone had replied to my post. This isn't something I like to spend every waking moment thinking about. 

PinkCamino

Yes my doctor gave me those stats. I think you want us to tell you that surgery isn't your best option- I can assure you nobody here will do that. If you're not satisfied with your care then keep seeing doctors who will take your issue seriously. I've had 2 losses and only had a partial septum. I know you don't want to be part of that statistic but septums are not good - they cause repeat losses if they are not treated. Do what you will with that information.

ETA: my cousin in Italy had a partial septum resected in 2012 after 4 losses. I spoke to her briefly and she saw a specialist who deals with uterine anomalies. Clearly you are not seeing the right type of doctor.

buggirl72

PinkCamino said:

Yes my doctor gave me those stats. I think you want us to tell you that surgery isn't your best option- I can assure you nobody here will do that. If you're not satisfied with your care then keep seeing doctors who will take your issue seriously. I've had 2 losses and only had a partial septum. I know you don't want to be part of that statistic but septums are not good - they cause repeat losses if they are not treated. Do what you will with that information. ETA: my cousin in Italy had a partial septum respected in 2012 after 4 losses. I spoke to her briefly and she saw a specialist who deals with uterine anomalies. Clearly you are not seeing the right type of doctor.

Pink, I'm glad you were able to provide this example to OP.  I was not going to make any assumptions based on the American health care system (or Canadian) that the vast majority of this board deals with so I am glad you have provided a nice, concrete example that there is at least one doctor in Italy that does specialize in removing septums.

OP, while we do not expect everyone to spend all of their time on this board it is considered good etiquette to at least respond to replies to your post. Quanda made her comment when more than a day had went by and your login information showed that you had not even read the responses (yes, we can see that). Since you have now read the replies, I think you can tell that the women that have experience with septums took their time from their schedules to give you thoughtful answers.

Unlike yahoo answers, this board is a support community. Many of us have, and still receive, support from the beautiful ladies here, and many of us stay because we want to give back to those who need it. Please do not try to make us feel like there is something wrong with us because we choose to log on to this board daily.

kait3210

qanda2013 who I felt was attacking me for not reading the guidelines, which I did, and still don't know how I broke, and for replying too slowly for her standards. She was both the first and last replies, both with negative messages, wrapping any kindness in the middle in an ugly bow.

OK, so you could see I had not logged in and read your replies. How is that worse than if I had logged in, read them, and ignored them? There are a thousand reasons someone might not be able to check back for a day (see above). I'm not sorry for this.

I am sorry if my introduction line " I've never posted here before-- and I hope I don't need your support for long ." was in bad taste. I thought the simile face lightened it up, guess not. I was struggling for words to introduce myself to a group like this. What should I have said? "I hope I am TTCAL for many years to come?" Obviously no one wants that. Obviously. That's why I thought I could say the truth, because clearly its what everyone wants. But please before you snap back with mean replies, notice that I said "I hope I don't need your support for long" I didn't mean I wasn't hoping to become part of a community and give back for many years to come. The negativity that you want to see just isn't there.

I know the guidelines warn newbies that this is a close knit group. But by reaching out to you, all I have gotten are condolences or negativity. I do appreciate the condolences and the knowledge of not being alone. It has helped me deal. But now I want to move forward. Don't we all? Why am I evil for wanting to more on and keep working for the end goal? 

I didn't come here looking for someone to tell me I don't need surgery. I came looking for more information in order to make the best decision available to me. Nor did I come to have someone else do my Googling for me. I'm pretty good at finding things on the internet. But somethings are harder to search for than others (like a person with a common name, or anything that could be associated with porn, for example). When I search for terms related to uterine septum, I get pages and pages of forum posts -- like this one -- that often just tell the story of one women's heart-warming or heart-crushing story. There is often a small nugget of something worth learning in these stories, which is why I spent hours and hours reading them and will continue to do so. But I don't think anyone would tell me I should make my own decision based on someone else's outcomes. Some of you have been lucky enough to have doctors who would tell you your chances of success, I have not been so lucky. And I am very, very grateful to you that you would take the time and reply to share the info you have that I was unable to find (looking at you PinkCaminojlworden710). This is what I came here asking for. Even these unsourced statistics, puts me leagues ahead of where I was on making an informed decision. Which, if anyone actually ever cared, has swung toward having the septum removed before TTC again. I've gotten some support from the Yahoo group I mentioned (that's Yahoo Group, not Yahoo Answers-- and I'm the one being accused of not knowing how to use the internet). They pointed out some things that I knew, but had not been considering. Like that miscarriage itself is not without risk, even ignoring the emotional angle, and that even if I do succeed in carrying to term the baby's development and health could be affected. 

This is my last post on your group. I won't come back here again. I have a strict personal rule against staying where I am unwanted. And this "support" group has made it pretty clear I'm unwelcome. Why, I don't understand, but it doesn't matter. I won't force myself upon you. Thank you again, for those who sent their condolences. And double thank you to those who shared a little of their own experience or knowledge on this condition that I am still new to and trying to learn all I can about. 

Goodbye.