I wanted to take a break from IVF for a little bit, maybe six months or so. But I still wanted this time to be somewhat productive, so I decided now would be a good time to look into getting a new OBGYN and ask about any testing that I may not have done yet. As it turns out there were several tests missing. I am now seeing two OBGYNs, and still deciding which one I want to see regularly. I am also seeing a specialist for something more serious than my fertility, that will affect when I’ll be able to do my next IVF cycle.
HSG Test Results
From what I hear the HSG test (Hysterosalpingogram) is one of the more routine tests done on women who have recurrent pregnancy loss (RPL) or unexplained infertility. One of the new doctors I am seeing suggested I do an HSG test because there is no record of me doing this test. When she described the test to see if I remember doing it, it did not sound familiar. I told her that I’ve done SIS tests, but I’ve never done an HSG test.
For those of you unfamiliar with HSG test, it is one method to see if you have blocked tubes or scar tissue in your uterus, which affects a woman’s ability to become pregnant or continue to carry a pregnancy. They use contrast dye to see if there are any abnormalities. I had done a little research on HSG tests and learned women who experience more pain during the procedure tend to have scarring of their uterus or blockage in their fallopian tubes. There were three women performing the HSG test on me. One was the radiologist inserting the catheter and dye, the other was moving around the x-ray machine, and the third was in training.
I was expecting maybe a level of pain similar to my SIS test, which normally tends to feel uncomfortable, but not unbearable. But this HSG procedure was really different. After she inserted the catheter she said there was a little balloon on the end of it where the dye goes through or something. Honestly I can’t remember exactly what she said because I was crying in pain.
If I had to describe the pain I’d say it was one of the worst pains I’ve felt in my life, but it would come in very short waves. My pain would go up each time she put a little more dye in. It feels similar to miscarriage pain, at least that’s what it felt like to me. I really was not expecting this test to be this bad. In the middle of the test I wanted to tell them to stop everything. I wanted to get up and leave in the middle of it. The thought crossed my mind as I was laying there crying, I want to just give up on trying to have a baby. I can’t take any more of this.
I focused on deep breathing. I probably sounded like one of the women in the maternity ward with how loud I was breathing. I didn’t care, it was helping me somewhat. I was also doing a grounding technique that tends to help me, where I push my thumb and pointer finger together. But the pain was so intense at times that I was pushing my thumb nail incredibly hard into my finger. The nurse in training seemed to feel really bad for me and offered her hand for me to hold a couple times. I told her “it’s okay” and thanked her for the offer once the wave of pain subsided.
It sucked, like really sucked. But I got it done and over with. I experienced cramping off and on over the next few days. I’ve heard this test and the level of pain each person feels really varies. Some women don’t really feel much of anything, while other women describe it as being brutal. It really depends on what is going on inside your tubes and uterus.
The results of the HSG procedure were that my tubes looked nice and clear, but I have significant scarring in my uterus. This can cause recurrent pregnancy loss and infertility.The report reads, “Significant scarring and synechia within the uterine cavity narrows the body and lower uterine segment.” I read the sentence and one word stuck out to me ‘synechia.’ Synechia? What the heck is that? I decided to Google ‘synechia uterus’ to try to learn what that word meant, because my doctor didn’t mention that word to me. Mind you, I am reading this report that was emailed to me after I spoke with her.
My Google search: Synechia uterus
Google results from Cleveland Clinic: “Asherman’s syndrome is an acquired condition (one you are not born with) that refers to having scar tissue in the uterus or in the cervix (the opening to the uterus). This scar tissue makes the walls of these organs stick together and reduces the size of the uterus. Asherman’s syndrome is also known as intrauterine synechiae or uterine synechiae. Synechiae means adhesions. Asherman’s syndrome is also called intrauterine adhesions (IUA).”
My doctor told me I would need another surgery to remove the scarring. Problem is, sometimes the surgery to remove scarring can also create more scarring. With my most recent miscarriage I needed three subsequent surgeries to clear my uterus. This surgery would make it the fourth. I am now wondering if I have endometriosis, which can cause scarring to reoccur over and over. I’ve never been tested for endometriosis, so it’s possible I may actually have it, which would explain why I’ve needed surgery after surgery to remove scarring.
From the little I understand, it looks like it is more likely the scarring I am experiencing may be from complications from the D&C procedures I needed after my last miscarriage. But that does not mean I don’t have endometriosis, it has not been ruled out yet. This HSG test opened a real can of worms and is leaving me with more questions. Even if I decided to stop trying to have a biological child, I would need this surgery regardless because ignoring Asherman’s Syndrome or Endometriosis can lead to more and more scarring, severe pain, and issues with menstruation.
On the bright side I am happy that I am getting the necessary testing done that I need if I want to continue IVF treatment. I am surprised my previous two Reproductive Endocrinologists never thought to do an HSG test. I’ve heard from some women in the infertility forums that this test was done on them fairly early on. But I suppose it’s better late than never. I am scheduled for my pre-op appointment this Friday, where I will learn more about the surgery. They told me the first step they want to do is a hysteroscopy. Which I’ve had done in the past, but it sounds like they may only do a hysteroscopy this first time and not the actual scar tissue removal at the same time like what my previous OBGYN would do. I’ll find out more here in a couple days what their plan is.
After seeing the first doctor who recommended an HSG test, I saw another OBGYN to get another opinion. This second doctor said that it was good I was going to get an HSG test done and agreed with the first doctor. She also recommended I do a Karyotype Test where they look to see if there are any other genetic issues I may have which could be contributing to the miscarriages. We already know I have the MTHFR gene mutation and both doctors agree that this mutation may or may not be contributing to the miscarriages. Both said that MTHFR gene mutations are common and there isn’t enough studies to make clear correlations between MTHFR and recurrent miscarriages. They also both said that it’s possible I could be the exception and that it could be a contributing factor.
While the first doctor decided on an HSG test, the other one decided to do a Karyotype test. She asked me, “Have you ever been tested for a balanced translocation?” I told her I was fairly sure I was tested for this, because I saw a geneticist years ago. I explained both my husband and I took the Natera Horizon 274 Test which analyzes your blood to see if either partner is a carrier for genetic diseases. But she said, “I don’t see anything in your records indicating you were tested for a balanced translocation. I am fairly certain this is not a part of the carrier screening.” As it turns out, my records do not show anything relating to a karyotype test. She suggested I do a Karyotype test to check for a balanced translocation.
Years ago I remember calling my reproductive endocrinologist and asking her if I had a balanced translocation, after I had done some research on my own about it. I remember her saying, “If you did the Horizon 274 test, then you’ve been tested for a balanced translocation.” But this new doctor is saying the exact opposite of what she said. I told this new doctor, “It would not surprise me if they never tested me for a balanced translocation because they told me the wrong thing before about how I did not have the MTHFR gene mutation and I found out years later I really did have it. So let’s go ahead and do the Karyotype test, especially since there is nothing in my record about a karyotype test.” For the karyotype test it was a blood draw. I called today to check if my results were in yet (since it’s been two weeks now), but they said this test typically takes longer, upwards of three weeks. So now it’s a matter of just waiting.
More Surgeries, One for Something More Serious
While I am waiting for the results from the Karyotype test, I will be speaking with the surgeon this Friday about what to expect for my uterine surgery to remove the scarring they found during the HSG test. I think it’s good that I am seeking out different opinions because both discovered tests I was missing. This is what I wanted, I wanted to know if there was anything missing. I feel good that the wheels are in motion, and I am making progress in a way during this break from fertility treatment.
But I have also been doing testing for something completely different. Let me take you back to earlier this year…
In January 2020 I first discovered a small lump in my breast. I didn’t think much of it at the time because it was so small and felt only slightly different from the rest of the tissue in my breast. I decided to make a mental note of how big it felt and see if it changed at all in the coming months.
Months later I was preparing for my frozen embryo transfer with hormonal injections and I gained some weight. The lump felt a little bigger this time, but I figured maybe because I gained weight, or even because of the hormones I was on. The embryo failed to implant and I stopped taking injections because I wasn’t pregnant. I assumed maybe my body needs to have a menstrual cycle or two before this lump will get smaller.
I’ve had two menstrual cycles since then and lost some weight. But instead of the lump getting smaller it feels as if it’s nearly tripled in size. My mom has had cancer twice, breast cancer and then endocrine cancer inside her lung. My dad also had cancer. So I am considered high risk. About four years ago I asked my previous doctor if I should get a mammogram but she told me that I was too young. When you are younger breast tissue is more dense, which makes it more difficult for them to see anything on the mammogram. That doctor actually told me she would not refer me for a mammogram unless my mom’s doctor wrote a letter of referral to her, then she would consider a having me do a mammogram. My mom’s doctor was totally on board with doing this, but he retired shortly after and I never got that letter.
It seemed like a difficult process with several hoops to jump through, not to mention my doctor seemed dismissive about screening me. But I was concerned because my mom had aggressive breast cancer and my dad had just passed away from lung cancer although he was not a smoker. I think anyone in my position would want to at least get screened. But after trying to talk to my doctor again about screening she said the same thing and persuaded me not to get screened. I thought, “Maybe I am too young. Maybe I’m worrying for nothing.” So I decided to drop it for a while.
But now that I can actually feel this lump and it’s grown quite a bit in less than a year, I decided I really do need to get this checked out. Since my mom’s original doctor who was willing to write the referral had retired, Mom suggested I speak with the doctor who did her surgery to see what they say. They referred me to do a mammogram really quickly, within just a couple days.
The radiologist said she could definitely feel something. After waiting and waiting to hear the results, the radiologist assistant relayed the message to me that the radiologist couldn’t find any signs of cancer and to “come back for your next mammogram at forty years old.” She also said, “sometimes our breasts just get lumpy, maybe your fertility treatment had something to do with it.”
With this news I almost decided not to even go to the follow-up appointment with the doctor. But I’m glad I did. My doctor also said that she could definitely feel something. “It feels like a tumor.” At first my brain stopped comprehending anything she said after ‘tumor.’ She explained the name of the tumor she thought it was but I was in a daze, only hearing ‘tumor.’ How could that be?
I was even more confused because she said she didn’t think it was cancerous yet because it feels softer, and cancer tends to feel harder. I didn’t even realize you could have a tumor and it not be cancerous. “Given your family history and your high risk of developing cancer we should schedule surgery, but first let’s do an MRI.” She said an MRI is more sensitive to finding cancer compared to a mammogram, which can miss seeing cancer especially in younger women with more dense breast tissue.
I asked my doctor if she thought my recent fertility treatment may be causing the lump and she asked, “Did you have the lump before the treatment?” I let her know that I did in fact feel the lump before treatment. She didn’t have a clear opinion either way whether she thought the lump got bigger because of the fertility treatment, but she did point out the fact that this lump was here before treatment.
I told her I was hoping to start up with IVF treatment either by the end of the year or early next year. I asked her “What’s the longest I could go before needing this surgery on my breast?” and she said, “Before the end of the year, and before you try IVF again.” This seemed to add a new level of urgency to the situation. Before I asked her that question I figured she would tell me several years, because it didn’t seem cancerous just yet. But we won’t know for sure until I do an MRI if it’s cancer.
She went on to say regardless of what the MRI shows, we should remove it because I am at high risk of it turning to cancer. So at best, this surgery would be preventative and at worst I could find out that I have cancer with this upcoming MRI. I may need to do a biopsy, which I need to ask her if that is different from the surgery she is talking about. She was very clear about the fact that I should not do IVF again until this lump is removed. She explained my individual odds of getting cancer is a little over 25%. I was actually considering cancelling this appointment beforehand because I was certain she would say the same thing the radiologist said, “next mammogram at 40” but this doctor said, “Radiologists can miss things. Some women in their 30s do get cancer.”
I left that appointment feeling completely blindsided with the news. I was not expecting that at all. I assumed she would also be dismissive like my previous doctor years ago, instead she was already talking about doing surgery. I take what she says very seriously because I truly believe she saved my mom’s life. They scheduled my MRI for the earliest time, several weeks from now. At this point we have not scheduled surgery yet because the MRI may show that it has spread to other parts. My mom’s breast cancer was the type you could not feel, and could only be seen on MRI as tiny specks all spread throughout. So it’s possible that this is more than just a single lump. It’s also possible it’s not cancer, but my doctor still wants to remove this lump to prevent it from turning into cancer.
Emotionally, I am a wreck, I’m not going to lie. Not only do I have yet again another surgery for my scar tissue in my uterus but now it’s looking like I will also need this surgery to remove the lump in my breast. It’s really overwhelming that both of these are happening at the same time, on top of the fact that I need both surgeries in order to move forward with IVF treatment. I still haven’t processed this news fully, I truly feel like I am in a daze and none of this is real.
I suppose instead of spinning off into space with worry, I should ground myself by being grateful for finding out this information. I am so thankful these doctors are doing their best to really investigate what’s going on with my health. They really are on top of things. I am glad I decided to seek out new doctors for my care, because I could have been dealing with so much worse physical health later down the road.
I need to practice other healthy coping skills in addition to gratitude. None of this news is easy to digest. But last night I was able to find some dark humor in the whole situation. I joked with my husband, “They are taking parts from me there [pointing down] and now here [holding boob]. What’s going to be left of me?” I laughed and I was able to get him to laugh too. I didn’t think I would be able to find humor in any of this but maybe this coping skill, among others, will help me get through all of this.
Further Recommended Reading:
Breast Self-Exam from BreastCancer.org
Breast Cancer Statistics in Young Adults from Young Survivor Coalition
How do you find doctors or specialists? I feel like my doc is useless and just told me I can only do IVF. Also willing to go out of state. I’m appalled that your REs didn’t do an HSG first? I guess if you’re doing ivf then it doesn’t matter but anything else it does!!!
I know, I can’t believe they didn’t do an HSG either, I wish I had known what that was back then so I could ask. That’s too bad to hear you are not happy with your doctor, I definitely know how that feels.
So I’m still deciding between two doctors. How I found these two is that the first one was referred to me by my RE after my RE retired a while back. She just handed off all her clients to that office. The other one I found by calling my insurance company and asking for OBGYNs who were considered in-network. At the moment I am only seeing two OBGYNs, and I am in the process of trying to get set up with an out of state RE, but there is a long wait time…all the way out until mid-December. But I’ve heard good things about him. He will also do Skype appointments for out of state people. Currently (as of October 2020) we have no REs in Alaska unfortunately. There are some OBGYNs who have a lesser certificate in reproductive endocrinology, but it is not as in depth as those who are board certified reproductive endocrinologists. For example some OBGYNs can specialize or have more training in infertility. These OBGYNs are the ones I’m currently seeing, who have more training in infertility compared to other run of the mill OBGYNs.
Another website I highly recommend is FertilityIQ.com where you can search doctors and see actual patient reviews. I don’t think there are a whole lot of reviews yet for us Alaskans but it can be helpful for finding a doctor out of state if needed.
Hope you are doing well, take care!