Anna* is 35 years old and has been struggling with endometriosis since her puberty. Like many women her age, it took her more than ten years to get an endometriosis diagnosis and she had to suffer a lot along the way. It was when she started to try getting pregnant that she experienced the full-blown, debilitating symptoms of severe endometriosis. After having to go through surgery to remove as many lesions as possible, she learned that IVF would be her only hope to get pregnant.
Because Anna’s story covers many topics it will be published in two separate articles. In this first part, we talked about her struggle with endometriosis and in the second article she will tell us about her current journey through IVF.
*Anna's name has been changed since this subject is very personal.
When did you first experience painful periods?
Anna - I have had painful periods from the start. I remember the summer when I had my first period, I was on vacation with my parents and the pain was so strong I spent several days stuck in bed. I can still remember the bedroom. So yes, it was very painful from the start and I always had days when I couldn’t do anything.
Did you talk about it with your mom?
Yes, she told me that it was the same for her when she was young, that periods were painful. So I thought it was normal and I think, as for many women with endometriosis, you just end up thinking that maybe you are a bit too sensitive, that you just need to suck it up.
How old were you when you had your first ob-gyn appointment?
I don’t remember exactly. I remember that I talked about my period being painful. They did an ultrasound and said that there were probably some cysts on the ovaries but that there was nothing they could do. I feel that this is what I have always been told: ‘There is nothing we can do, you will have to make do, you can take acetaminophen”. When I was in high school they suggested I take nonsteroidal anti-inflammatory drugs (NSAID). It helped a little bit but only for a few hours each time. As soon as the drug leaves your system the pain starts again. When I was in college, the pain started getting worse and I started to faint because of the pain. It started becoming a routine. Each new cycle, when my period started, I knew I would faint in the morning so I had to lie down for some time in my bathroom before being able to start my day.
Did you start dreading your period?
Not really because I was used to it, I knew I had to live with it. But at some point, I started passing out during the day, not only in the mornings, as soon as the NSAID stopped working because the pain was so intense. It started to be a real problem in my daily life, I remember one day, I was at the mall in the middle of the day and the pain was so intense that I ended up vomiting on the ground as I couldn’t get fast enough to the restrooms. Another time I was walking in the street with my now-husband and he had to help me lie down on the ground. These situations were really humiliating and embarrassing in addition to the brutal physical pain.
So your family, friends, and people close to you had to start noticing what you were going through? Did they say anything?
Not really. I don’t think many people saw it and the one that did just didn’t realize that it was not normal.
I switched ob-gyn when I was in my early 20s. Looking back I think that the new one identified endometriosis but didn’t give me a diagnosis. She told me to take my contraceptive pill continuously every day without any breaks, which would mean I would not have periods anymore and so no more pain. At the time I was young so I didn’t think too much about it. She was giving me a solution to my problem, I just did what she said. It worked, so I was happy and I kept taking the pill continuously for years. Nobody told me about potential side effects of the pill.
At the time I had never heard the word “endometriosis” even though I was studying to become a pharmacist. It was later when I started working that one of my colleagues told me that she had been diagnosed with endometriosis that I really learned about it and realized that it might be what I had.
I thought that it might be a good time to stop taking the pill and see how my body reacted without the hormones after all these years, plus I was starting to think about having kids.
Did you talk to your ob-gyn about it?
No, I just stopped taking the pill on my own (in hindsight it was really not the best idea I had). I thought that if I was not feeling well I would make an appointment. This happened just before we moved from France to the US. The first year after stopping the pill went great. I felt some pain during my period but nothing compared to what I was experiencing before, I could work without any problem. I was really happy but unfortunately, it didn’t last. After one year the pain came back gradually and it was different than before. I still had uterine cramping but I also had pain in my back and the symptoms worsened over time. The pain lasted longer. At that time we had moved to California and were trying to get pregnant.
Before trying to get pregnant, were you afraid these symptoms could impact your fertility?
No, at the time I didn’t think there could be a link between my symptoms and fertility issues. But after some time the pain was just getting impossible, and I was not getting pregnant so we started having questions.
Did you find a doctor easily when you moved to the Bay Area?
Yes, quickly after moving I found a primary care physician and an ob-gyn through Kaiser, our insurance provider. For the ob-gyn I chose a doctor who spoke French, it was easier for me to communicate with her but in hindsight, she was not the best.
When you told her you had very painful periods what did she say?
It was the usual answer: “It’s normal to experience pain during your period”. At the time people were talking more and more about endometriosis, and celebrities were starting to share their stories so it was public knowledge then and I had spent some time educating myself on the disease. I went to see the ob-gyn with a list of classic symptoms of endometriosis and told her that I checked nearly all of them (pelvic pain, lower back pain, right shoulder pain, digestive symptoms such as diarrhea, pain while urinating, intense pain while going #2 with hot flashes, pain during intercourse, heavy flow periods, long periods) so I asked her if I could have this disease and she told me: “I don’t know, maybe, probably, but I don’t have any way to confirm it and it wouldn’t change anything because there is nothing we can do to treat it”.
Taking the pill continuously is a way to avoid the symptoms but you were trying to get pregnant so it was not a possibility for you, what did she tell you?
She really didn’t have anything to offer me. She just told me to take some acetaminophen. She didn’t tell us anything about getting pregnant, we had been trying for about 3 months at the time so she just told us to keep trying. I think she mentioned the fertility services at Kaiser as something we might eventually reach out to after at least 6 months of trying but that’s it. She was just not a great doctor for me.
After that, we traveled to France to visit our families and I experienced severe pain, it was the worst I had ever felt, I was not home to manage my crisis quietly and I was supposed to take the plane shortly after so we decided to go to the ER. I remember seeing an emergency medicine resident and he said “I cannot deal with it”. It was not a disease, it was just “it”. I was in so much pain I could barely walk but he asked me to go to another building to find the specific ob-gyn ER. The nurse there gave me an IV and it helped a little bit, I told the ob-gyn I suspected having endometriosis. She told me that a lot of people were talking about endometriosis but it didn’t mean it was what I had. She started feeling my abdomen, and I saw a change in her face. I think she started taking me seriously, she did an ultrasound and saw a lot of big cysts (including one which was 10cm in diameter) on the ovaries and told me I was probably right to suspect endometriosis and that something needed to be done (we still wonder how the ob-gyn in California didn’t feel any of them just 3 months earlier). She told me I needed to have an MRI to locate the endometriosis adhesions and get surgery to remove them as soon as possible. She also told me to get back on the pill right away to reduce the symptoms and take stronger pain relievers.
Then I got back to the US and had an appointment with my ob-gyn. She told me that they don’t use MRI to locate endometriosis but instead perform laparoscopic surgery to diagnose and treat at the same time. She told me to consult with the infertility department to decide if I needed to try fertility treatment before or after having surgery. As I had cysts on my ovaries there was a risk they could be damaged during the procedures or could even need to be removed.
The fertility surgeon they put on my case to perform the laparoscopy to remove the cysts was a male doctor, nearing retirement, who was not very nice (in messages he would talk about me as if I wasn’t the recipient of the messages) and I was just not convinced by him. At the same time, my pain was getting worse even with the pill and I started having longer and irregular periods.
I decided to switch ob-gyn, and my husband asked his primary care physician to recommend someone who specializes in endometriosis (mine had just recently switched facility and was now half a state away). The ob-gyn he recommended was better. We still had to decide if we wanted to do fertility treatment before the surgery. I was also able to meet a fertility specialist (REI), who ran tests for both of us and then explained the different solutions available to us (timed intercourse with very low success rate in our situation, insemination with at best 15% success rate, IVF with 70% success rate). But I was in so much pain that it seemed impossible to wait for the surgery to be able to do any of these first.
I had started having worst digestive disorders (blood in stool) so I had a colonoscopy to have a look before having the laparoscopic surgery, on the part the doctor was able to observe she didn’t see anything specific at the time. After the colonoscopy the pain got even worse and at one of my appointments, the ob-gyn saw that I was in terrible pain so on the spot she called a friend of hers who was a surgeon specializing in minimally invasive gynecologic surgery and they scheduled the laparoscopic surgery for 2 weeks later (instead of having to wait multiple months). It was good to see that they finally understood how badly something needed to be done.
At this point, it became clear that you would need to go through IVF to have children, was it a progressive realization or did it come to you as a shock?
At the time I was in so much pain, I couldn’t care less. I couldn’t focus on anything else, my pain was too strong. I was unable to do anything during the day and I was not able to rest during the night. My period could last for 3 weeks and I had 1 week of break and then it would start again. I was really tired and I had to start taking morphine for the pain, which is something I really didn’t want to do, and then as it was not enough they added a nerve pain medication, gabapentin. So it felt like I was just surviving, having kids was not the priority anymore.
So you were ready for the surgery?
Yes, after my ob-gyn called the surgeon, I still had about 2 weeks to go before the surgery and the wait was really hard because I still had to manage the pain (I was spending a good part of the day in hot water baths, I remember I watched the Chernobyl HBO show from that glorious bath with my husband on a chair next to me) and with this kind of surgery you really don’t know how it is going to go because they are diagnosing and treating at the same time. So you don’t know how you are going to be when you wake up. What are they going to have to remove? Will the pain stop after the surgery or not? But it was the only solution available and the surgeon was very clear about all this.
I was anxious about the surgery and what they were going to find. What scared me the most was to end up with a colostomy bag if they needed to remove part of the bowel. I was less afraid of needing to have my reproductive system removed. Before the surgery, they ask you to give consent for them to remove certain things if needed and at first I didn’t want to consent to them touching my intestines. But right before going in for the surgery I changed my mind and gave consent.
The laparoscopic surgery is an ambulatory surgery. In my case, it lasted for over 3 hours and I had a hard time waking up after it, as often in the US they are in a rush to get you out of the door, so I had to leave in a wheelchair, still very groggy from the general anesthesia.
When you woke up, what happened? Did they explain to you right away what they had found and if they had to remove anything?
The first question I asked of course was “Do I have a colostomy bag?”. But I didn’t and I was relieved. They spoke to my husband to explain everything, I was too drowsy by the anesthetic to really focus. They told us I had deep infiltrating endometriosis: I had lesions around my ovaries, my fallopian tubes, close to my intestines and my bladder, and generally a lot in my abdominal cavity. I still had my ovaries, they were able to remove the cysts without touching them but they had to remove my fallopian tubes. I didn’t realize what it meant right away but it means I will never be able to get pregnant on my own since the sperm and the eggs need the tubes to meet. But technically we could still use my eggs and my husband’s sperm to conceive through IVF.
They also found endometriosis lesions on my diaphragm but they told me it was too close to my heart to remove them without a cardiologist performing the surgery. If I want to remove them someday I will need to consult a specialist but for now, if it doesn't bother me, it’s better not to do anything. They said that maybe these lesions could explain the pain I had in my shoulder.
They also found that my uterus, ovaries and intestines were tied together by endometriosis lesions which explained a lot of the pain I had as the organs were pulling on each other.
While operating one of the tools made a small hole in my uterus, which the surgeon fixed and she was convinced it wouldn’t have consequences, however for us it is obviously one more shadow on our ability to become pregnant.
Did it take a long time for you to recover from the surgery?
Yes, it took me some time, I was in pain after the surgery, especially because some of the gas they use during the procedure cannot be removed at the end and irritates nerves until it finally leaves the body. Unfortunately, I developed a deep vein thrombosis (DVT), which is a postoperative complication where a blood clot forms in a vein, and could cause major heart or pulmonary damage if it starts traveling through them.
Because I was in so much pain before the surgery I was already not moving a lot plus I was taking estrogen through the pill which is a risk factor, and after the surgery, I was not moving a lot either because I was not feeling well. In France, they usually prescribe preventive treatments like taking anticoagulants before surgery or wearing compression stockings after the surgery but they didn’t talk about any of that here. I am a pharmacist so I should have known but I was not able to think clearly. I was mad at myself afterward, but at the time I just didn’t realize what was happening.
When did you realize you were experiencing DVT?
I was having pain in one of my legs but I thought I was having a cramp. They give you a medication after surgery to prevent nausea and vomiting and I just thought that the cramp was a side effect of that medication. So I stopped taking it, but it didn’t get better. It was maybe 3 days after the surgery. I had a postoperative appointment and I told the doctor about it and she looked at my legs but they were not particularly red and the one that hurt was not really more swollen than the other one so she said it was probably nothing.
Maybe 2 days after that I contacted a physical therapist that I was seeing at Kaiser before the surgery. I told him that I just had surgery and that I now had cramps and I was wondering if he could suggest some stretching exercises to help me. He told me that having leg pain after surgery was not normal and that I should tell my doctor. I explained that I had told her and that she didn’t seem worried but he said that I should contact her again and insist. So I did that and the doctor prescribed a Doppler ultrasound and that’s how they saw that it was bad and that I needed to go to the ER. Once I arrived in the ER they told me that there was a blood clot and that they needed to treat it right away. My husband and I were shocked because we really had no clue it could be something serious and potentially life-threatening. The ultrasound technician was not very clear, he tried to get me an appointment with my primary care doctor but she was out that day, so he sent us to the ER. It felt that if it could be resolved by our primary care doctor it was not that major, I remember my husband asking them “Are you sure we need to go to the ER? It’s going to cost us a lot of money”.
Yes, that’s the problem with the US healthcare system sometimes you don’t want to spend money for “nothing” and it can lead to terrible outcomes. Can you explain how they treated your DVT?
They prescribed anticoagulant injections every day for 5 days and then I had an oral treatment for 3 months. They also ran tests to check whether I had risk factors for coagulation problems - it actually took a few months to get closure on this as the first round of tests came back positive, so it had to be redone a few times.
I had been taking a combination birth control pill since my visit to the ER in France, but after the DVT they switched me to a microdosed progestative-only pill due to the clotting risks with estrogen.
Did you have to give yourself the injections or did you need to go to the doctor?
No, I did it myself, well my husband did and it didn’t go very well. It was painful and stressful. We asked nurses later about the difficulty we had with the injections and they told us that medication was known to have poor needles that can bump back on the skin instead of going in. It felt more and more difficult injection after injection, maybe because I was more and more stressed.
After the treatment, was there a time when you felt better?
Yes, after some time it felt like I was living again, I could go out and do activities that I was not able to do anymore before that. About 1 month after the surgery I was able to start going out for long periods of time, and a few months later I was able to travel to New Zealand and do long hikes - it really felt like living again after having been stuck unable to move for months.
