'I Have Endometriosis—Doctors Said the Pain Was Just 'Being a Woman''

When my period started at the age of 14, I remember my mom saying to me that I might get a bit of pain and discomfort. But I was absolutely fine. Then, within about six months I started to experience cramping and, it's a strange thing to explain, but it was as if I could feel my ovaries when I ovulated.

To start off with, I thought I would just have to suck it up. My mom suffered from very heavy bleeding during her periods, and she didn't get any support with that, so she could only say that unfortunately this was what becoming a woman was like. But I was a ballet dancer, and in those days you couldn't wear a pad because you just wore a leotard and tights. Dancers had to wear a tampon and I found that quite uncomfortable. I suffered with a lot of bloating as well, and though I was told that doing some light exercise might help, the pain I experienced trying to exercise through my period progressively got worse and worse.

Typically it was female doctors who were better at listening to me. When I went to male doctors, I was told that I was a woman and this was what it's like. When I was about 16, I went in and spoke to a doctor about the pain and he was just not interested. It was like I was completely wasting his time. I remember him getting up and walking around his office, putting paperwork away and telling me: "What do you want me to say, Lisa? You're a woman now, you have periods." That was it.

Painful periods as a teenager

Shortly after, I joined The Royal Ballet, and all of a sudden I wasn't sure I could cope with the pain anymore. Previously, I had taken ibuprofen or paracetamol every four hours until the pain subsided and any bloating reduced. But when I was dancing all day, every day, it wasn't an option to say that I couldn't participate because I had my period.

I moved to London at the age of 16, and by 17, my roommates began to call ambulances during my periods because they didn't know what was wrong with me. My temperature would go through the roof, I'd be dripping with sweat, falling in and out of consciousness and would finally collapse somewhere. It was like my body just could not cope with the pain. The paramedics would come out but explain that they couldn't really do any more than give me strong painkillers. This happened a couple of times. My friends knew what it was, but it was fear from me not responding.

I then went to a female doctor and explained the situation; that I couldn't take time off ballet and that my flatmates couldn't keep doing this. She listened and said that I couldn't carry on like this.

Endometriosis Causes Severe Pain and Discomfort
Endometriosis has affected Lisa Suswain since she was a teenager. Getty/iStock

Contraception as a solution to pain

I had been on a combined contraceptive pill for a couple of years, but it gave me migraines and didn't stop my periods, so she switched me on to the contraceptive injection Depo-Provera and a progesterone only contraceptive pill. The effects of the injection lasted for three months and can completely stop periods, so by the age of 18 I had no more periods. Though I did get some degree of bloating and could feel my ovaries when I was ovulating, it was minimal and the injection stopped the pain. I could happily carry on dancing and with my life in general.

Life went on like that and I continued as a dancer. Nothing changed until I met my husband and, after my professional dancing career ended, we started discussing having children.

I needed to think about coming off contraception, but I was really fearful that when I did that, the same pain and discomfort would return. It did; and worse than before. I went to the doctors again then and that was when they referred me to a gynecologist. For the 10 years before that I had just had to suffer and be "grateful" that I had become a woman!

An endometriosis diagnosis

I was a bit hesitant because the gynecologist was a man, and my experience with male doctors was that they would tell me to "suck up" the pain. But he was really understanding and explained to me what I was experiencing: endometriosis. He was the first person who explained to me, at the age of 25, why I was in pain.

The way I understand it is that endometriosis is when a build up of endometrial tissue, which is tissue similar to the womb lining, happens outside of the uterus. In my case, the neck of my womb is also very narrow, which affects things even more. I had a few laparoscopies to clear away the scar tissue that had built up, and they eased the pain for a little bit but they didn't resolve the situation. For me, the only thing that helped was contraception. At one point, doctors tried to switch me to the menstrual coil, but that was a disaster because I went into shock during the procedure.

When you say endometriosis, most people, if they have even heard of it, say to me: "Oh, that's heavy bleeding." It is for some people, but for me, it was intense pain. When I retired from dancing I got a "normal" job and I remember going to stand outside with my manager one day because I was in so much discomfort. She timed these waves of pain and said it was like I was having contractions; the pain would build, a nauseous feeling would come over me and I would feel like I was going to pass out. This pain kept subsiding and then returning.

Lisa Suswain Has Endometriosis
After 10 years of debilitating pain, Lisa Suswain (pictured) finally received a diagnosis of endometriosis. Lisa Suswain

Getting pregnant with endometriosis

We had also been told by my gynecologist that endometriosis shouldn't stop me having a baby, but it might make it harder. Three years later, I was still trying to fall pregnant.

Eventually, we were referred to an IVF doctor, because of a combination of my endometriosis and my husband's sperm, and we had IVF with Intracytoplasmic sperm injection (ICSI).

I was 29 at this point and the IVF drugs, and lack of contraception, caused a lot of pain and bloating. I went through months of hell; I was in agony. It got to the point about a week before my eggs were due to be harvested where I just cried and said: "I can't do this anymore." Then, when it came to the procedure, only eight eggs were harvested. There were people I heard of who had 19 or 24 eggs harvested.

From that, only two viable embryos were produced, so doctors implanted both. When they went to do this, what should have been a fairly painless procedure was actually horrendous. My mom had to leave the room because she couldn't cope seeing me in so much pain. That is when doctors told me I had a slight u-bend in my vagina. It was a surprise to me, and this particular doctor, because I'd had a few laparoscopies by that point. Fortunately, the doctors were able to implant both embryos, and though I lost one in the early stages of pregnancy, I now have my beautiful daughter.

After having her via emergency C-section, I immediately started taking contraceptives again. I wanted to be present for my daughter, not finding that once a month I couldn't cope with anything. But doctors encouraged me to try the contraceptive implant and it didn't work, so it was changed to a progestogen-only mini pill that I've been taking for years.

When we first got together, my husband and I decided we would love four children. But the effort we had to go through to get our daughter, not just the IVF, but the physical suffering I went through every month, was so intense that after she was born, we felt we were really lucky and really happy to have just her.

In the 10 years since my daughter was born I haven't been offered any additional treatments for endometriosis. I've never been offered another solution, other than longer term, looking at having a hysterectomy.

I see having a hysterectomy in the same way as I saw having my daughter via C-section. I feel we often subscribe to a sense of, "Unless childbirth goes a certain way, you're not a woman." My aim was to have a baby and I had a baby. So, if I have to have a hysterectomy for me to live a comfortable life, then that's fine.

Now, I want to see younger people educated about endometriosis, and doctors need to be better informed so they are looking out for it at an earlier stage. There needs to be more done to come up with other solutions for endometriosis, because staying on the pill has worked for me, but I'm not sure it's necessarily good for me. It's like sticking a band aid on the problem. I'm not in pain, but it's not getting to the bottom of the issue.

And, I know there were personal factors that made a difference to my endometriosis, like the narrow neck of my womb. Everyone is slightly different, so unless doctors are looking for the cause and treating the cause, people are going to end up in the same situation I have been in.

For years and years, I was the only person I knew who had endometriosis. Now, I know of celebrities who have spoken about the condition and I have a friend I met after my daughter was born who also has it. But I feel that the more people can talk about it, the more normal it becomes.

I'm certainly going to be making my daughter more aware. If she's saying that she's in pain, I'm going to be questioning where the pain is and when it's coming. I'm not going to be fobbing her off, saying, "Well, this is what happens when you become a woman, here are some painkillers and tampons; get on with it." It won't be done like that.

Lisa Suswain is the Director of award-winning home dog boarding franchise Wagging Tails and is a mindset coach and business mentor at Just Watch Me! where she supports former elite sportspeople and dancers pivot into entrepreneurship.

All views expressed in this article are the author's own.

As told to Jenny Haward.