Endometriosis Symptoms

Shownotes: Endometriosis Symptoms – Join me as I speak with Alli Leech about her 25-year struggle with endometriosis.  she will give you a guide to the symptoms, signs and treatment of endometriosis.  175 million around the world suffer from endometriosis.  You can check out previous podcasts around uterine fibroids treatment.

Alvern: Hello ladies, Alvern here.

Today we have a special show on where we’ll be looking at all things endometriosis. And to do that, I have a special guest on myself. Her name is Alli and I’m just gonna let Alli introduce herself.

Over to you Alli.

Alli: Hi ladies. Thank you Alvern, Hi ladies, my name is Allie and I’m delighted to be part of this discussion in relation to endometriosis. I hope you find it useful and I am ready for all questions. Thanks, Alvern.

Alvern: Brilliant. You’re very welcome.

Before we get into it, there would be some people on here who wouldn’t know anything about that very big long word that you just call, so I’ll let you start off by defining or giving your definition of what endometriosis is all about.

Alli: Okay, so endometriosis is basically where the lining of your womb grows outside of the womb on different organs around your body. In my case, it is attached to the back of my womb and to my intestines and my stomach. I also have some down towards my hips. It is basically the lining of the womb. Doctors still don’t know why, but it grows in these places and can cause a various amount of symptoms that can be quite debilitating. That’s essentially what endometriosis is and every month it sheds the same way as the lining of your womb when you have your period and that can be a particularly difficult time for women who have this disease.

Alvern: Perfect. All right, that actually sounds quite scary. I know a lot of women suffer from it around the world. Some of them don’t even know they have it. So this leads me to the very next question. When did you realise you had it?

Alli: I realised I had it, I was fortunate enough to be finally referred to a South African doctor called Dr. Kroon and before that, it had been 11 years of me trying to find out what these symptoms meant and I had been told by several different doctors, most of the Irish and that’s important later on, it’s just not particularly well-known in Ireland or studied by general practitioners.

But, it was 11 years of me being told by different doctors that I had irritable bowel syndrome. That I suffered from Dysmenorrhea, which is painful periods and other doctors actually used the term, “ghost pains”, which was almost suggesting that I was making it up.

I knew myself that it’s not normal, every month, to vomit with your periods. To get diarrhoea, bloating, constipation sometimes and vicious headaches. I knew, deep down, it wasn’t irritable bowel syndrome, there was something more serious going on. It was only when I tried for a baby and after I was married for two years, so I was trying with my husband for two years to become pregnant and it was … we had no success. I had never fallen pregnant so I went to get a referral to this very, very highly educated lady who was very focused on endometriosis symptoms and fertility issues. She knew, the minute I told her my symptoms what was wrong.

Alvern: Perfect, wow. That is amazing. Then in terms of … because you know this podcast I always try to help women … Okay, there’s other things that you get [inaudible 00:04:19 ] work like doing the right things with different skills and stuff like that but this, as far as I’m aware because I think one of my sisters actually suffers from this same problem or issue, it affects not only your everyday life but your work as well as, if you go to college, it affects college work as well. How, in terms of … From your point of view, how did it affect you and how did it affect your work at present or even before you knew you had it?

Alli: So that’s a great question. Along with my having difficulties in falling pregnant, every month I would feel excruciating pain with my period, and few days beforehand I will get very bad migraines. I didn’t know it this time because it was before I was diagnosed. But I actually had some endometriosis growing around up inside my jaw as well, which can cause migraines.

I finally got the diagnosis after Dr. Kroon put together my IBS type symptoms where I had vicious cramps, blotting, constipation mixed with diarrhoea as well as she asked about the other endometriosis symptoms, like my migraines. I told her about how sluggish I was and how I had very little energy ever. Also, 80% of women who suffer from endometriosis symptoms are diagnosed with anxiety or depression to some degree. Unfortunately, I was in that 80%.

I explained to her that I used to get panic attacks and I suffered from anxiety and she was this only doctor to put it together. Put all the symptoms together under the umbrella and say to me, “I believe you have endometriosis symptoms. I can do a quick scan to confirm that and then it is only diagnosed fully after you’ve had a laparoscopy. Which is keyhole surgery to confirm that the endometriosis is there and then it’s lasered away.

Alvern: That’s amazing. Then, in terms of your marriage. You said you’re married, so of course you are the best judge for the listeners out there. How does this affect your marriage? Because it seems like every single month.

Alli: Absolutely. Again, a really important area to be addressed. I’m very fortunate to have a very understanding, loving, compassionate husband who understands that sometimes making love can be very painful for me. It’s natural if you’re about to experience something painful that you tense up. He would know why that was happening, and if I didn’t want to actually go ahead and have intercourse, he was very understanding and he has researched the illness himself and he talks to me constantly about how I’m feeling. But it is very upsetting as a woman when you’re in love and you want to be physically intimate with your husband, but it actually hurts really really badly to have intercourse and also to orgasm. It can be really painful as well.

I’ve actually got a Twitter account where I talk to women around the world about endometriosis and I’ve spoken to some of them who’ve actually had relationships and then divorced because of the symptoms of endometriosis. And not being with somebody who I suppose is going to hold your hand through this illness and is prepared to take the good with the bad. There are times where it doesn’t hurt as bad. And we celebrate those. And when it is very painful we just find other ways to be intimate, to be honest.

Alvern: It’s really really scary and for women to … Not knowing that they have it and then the husband not knowing that they have it and then just getting a divorce or something as simple as that. If they only can find the right help for their particular requirements.

Alli: Absolutely. From my research, before I wrote my book. The average time it takes to be fully diagnosed from the time you have symptoms is seven years. That’s a global average, which is in my eyes it’s completely unacceptable that women have to suffer like this and it’s just not getting the attention that it absolutely deserves with 175 million women around the world having this awful illness to put up with. And it’s not getting the funding to find research as well. And I feel that that really needs to change.

Alvern: Wow. That is really heartbreaking. Isn’t it?

Alli: It’s very hard. I have two daughters myself. I had to have laparoscopy surgery twice in order to become pregnant. But I’m absolutely so blessed to have those two little girls and I’m also terrified that they’re going to grow up and there won’t have been a cure found in time by the time they start their periods. Another indication that you’re going to have this, women who start their periods earlier, tends to be the ones that go on to develop endometriosis symptoms.

I was 11 when I started my periods and my mother has mild endometriosis symptoms, but it’s widely believed to be hereditary. I have an auntie, on my father’s side, who definitely had endometriosis symptoms during her fertile years and another auntie on my mother’s side who have it as well. So the chances are … I’m really really hoping that neither of my little girls has it, but at the same time I need to be realistic and just be prepared to have a conversation with them that’s going to educate them about what they can do. Because there are things you can do. But I also hope to do a book and a podcast like this to raise awareness and even to start fundraising for a cure for this illness.

Because women around the world deserve this, to be cured and to go on and have normal relationships and normal pain-free life.

Alvern: Yeah, I agree with you. For the listeners out there … Obviously some of the women who are … Will be listening to this particular podcast, they will probably be like you, trying to have children. And you mentioned the other thing earlier, about you had to have a surgery in order to have children. What should be their approach if they find out, or maybe they haven’t found out yet that they have endometriosis. So if you can come from those two different angles. Those who haven’t found out yet, and then for those who found out, what is their approach towards getting pregnant?

Obviously, there are some people who would not be fertile, but for those who are fertile, what should be their approach, step by step, to ensure that they take the right step towards becoming pregnant?

Alli: Great question. I would say, if you have not been diagnosed and doctors will not confirm it until they have done the lapa