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 women 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.
What is Endometriosis?
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?
How Do You Know If You Have 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 at 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?
How Endometriosis Affects Your Daily Life?
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.
How Does it Affect Your Marriage Every 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.
Is Laparoscopy For You?
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?
If You Are Fertile What Next?
Alli: Great question. I would say, if you have not been diagnosed and doctors will not confirm it until they have done the laparoscopy surgery, it’s really the only 100% sure way to know when they actually go into your abdomen and with keyhole surgery to see the lesions in there.
What I would advise is if you have some of the symptoms that I’ve mentioned, please suggest to your GP, especially if it coincides with anxiety or depression. Say to them, is there any chance that I could have endometriosis symptoms or can we discuss me being referred to somebody who can finally diagnosed me or a gynaecologist who specialises in it, and see what their response it. They should be opened to that discussion and open to that referral and try to do that as soon as possible. Because we shouldn’t suffer like this.
There are things that could be done, but it needs to be diagnosed quicker, and doctors need to ask these questions to form a full view of what could potentially be going on with you and not just pass it off as Irritable Bowel Syndrome or “ghost pains.” The other advice I would give if you have been diagnosed with it and you want to try having a baby. Please go ahead and have the laparoscopy surgery. It’s minimally invasive, it’s keyhole surgery, there is the recovery time, four to six weeks usually, to make sure that you’re back up and running, and then maybe do what myself and my husband did.
After the surgery, we decided, do you know what, we’re going to go on a holiday together. It doesn’t have to be anything fancy, but just let’s not talk about starting a family. We’re just going to relax and enjoy each other’s company. Actually, for me, we ended up coming back pregnant. That actually happened three months after my first laparoscopy I found out that I was expecting. It was quite an emotional time, it was Christmas eve when I did the test and found out that I was expecting and it was so emotional, to be able to say after two years struggle and all of this pain, that our family dream was starting to come through. Now I have a five-year-old little girl, and I was lucky enough then, after my second laparoscopy to fall pregnant again, and I have my second little girl who is almost three.
I will suggest discussing all of your options with your gynaecologist, including possibly taking natural supplements to increase your fertility. Trying to cut down on things that would affect fertility for everybody, like alcohol or smoking. I gave up smoking completely because I wanted to start a family. I just wanted to give myself every chance I could. In my book, I talk about all the supplements that are required to just make you as fertile as possible. And then after the laparoscopy, if it’s successful you should fall pregnant.
I’m not saying every single person will. There may be other issues as well. But to give yourself every chance, go for the surgery and take time to recover. Relax and see what happens.
Alvern: Yes. That’s very good. Thanks so much for that advice. My heart goes out to all the women who are suffering from endometriosis. You’ve found out you have it, you’ve gone and you’ve had … So, what do you do now? Now that you know you have, there’s something that you probably need to do every month or twice a year or what do you do to maintain and to keep things under control.
How To Keep Endometriosis Under Control?
Alli: Great question again. Through trial and error, I discovered that in the beginning, I was taking painkillers, but I decided I don’t want to do that for the rest of my life, so there need to be other ways I can manage the pain. What I do is I’m a big fan of yoga. There’s one particular position called the Sufi grind, which is an exercise that really helps with the cramps and discomfort that comes with endometriosis. I do some very very slow jogging when I get the chance. But some people might say, if you can go jogging you must have energy. But always feel exhausted with my endometriosis symptoms, and that is absolutely the case for most women.
Really the jogging only happens on my good day, if I’m honest. My really bad days where I’m in a lot of pain and I have no energy, they are duvet days. And don’t feel guilty about taking duvet days. Your body is going through something very painful and needs to rest sometimes. So don’t feel guilty by doing that. Also, I would suggest, I often do these thermal packs when my cramps are very bad, and again there are instructions in my book on how to do it. It really helps with the cramp.
I would always suggest, if you need to take painkillers, that’s your decision, but most doctors as well as myself, I would never recommend long-term pain management to be left with painkillers because they can really cause damage to your stomach and there are loads of other side effects. I was starting to get very bad pains in my stomach from the painkillers, so it took a while but I gradually weighed myself off them, and I just tried to concentrate on the yoga and really simple exercises like jogging.
Alvern: Do you have to go back for more surgery, or what’s the future looks like for you in terms of keeping things under control?
Alli: I’ve spoken to my gynaecologist Dr. Kroon, in the Blackrock Clinic, and I’m due to go in in the next two months for a catch-up. That catch-up might end up in me having a third laparoscopy, because the pain, recently, has been worsening. And if I need to have keyhole surgery, I absolutely I’m open to it. If it’s going to help and just relieve the discomfort I have at the moment. I believe there is a maximum number of laparoscopies that a doctor or a gynaecologist wishes to perform, which I think it’s four. Just because of scar tissue, etc.
I would be going in if I have mine on my third one, and I do get a lot of relief from it, and usually, it takes up to about a year for my symptoms to fully reappear because unfortunately, there is no solution that is going to permanently get rid of the lesions. They would continue to grow back always.
Sometimes doctors suggest taking the contraceptive pill to ease your symptoms. However, because of my past experience with anxiety, I can’t actually take hormonal substances. So I can’t use that method to help me.
Alvern: So you are a little bit worried about if after doing your fourth one what happens next?
Alli: Yes. Absolutely I am. Yes.
Alvern: I had to mention that. I’m just so worried. Goodness, what do you do then? Again, if there’s something you can say for the future.
Alli: Yeah. If it came to it and I had finished having my children, if they suggested a hysterectomy and if it got extremely bad. It’s actually bizarrely a hysterectomy is not a cure for endometriosis. The lining of the womb actually continues to grow.
Alli: It continues to grow on the organs. Doctors and researchers have not come up with a solution. A hysterectomy will not solve it completely. But it may be an option if it gets extremely bad.
Alvern: That is serious. That is so very-
Alli: It’s bizarre, but apparently it’s true from research that they’ve done. Especially in America, they are particularly strong with research over there. And I read a published article about how these post-menopausal women who had had laparoscopies and had been studied, in some cases the endometriosis had returned and was growing on their organs again.
Alvern: That is really … Wow. That is so scary.
Alli: Sorry. Not post-menopausal. Post hysterectomy. Sorry.
Alvern: That’s still scary. Even if you’re post-menopause and you’re not supposed to be seeing your period anymore, you’re still having things growing. It’s so scary, no matter which way you look at it. Wow.
Alvern: Tell us about this book. Just for the listeners out there who would like to get a copy of it. So to begin with, tell us what it’s about. What they can find inside it and where they can actually get access to it.
Alli: It’s free on Amazon, and it’s called “25 years of endometriosis. A guide to symptoms, diagnosis and treatment.” It is the very long title but it’s actually a very concise book. It’s really a handy guide to take you through endometriosis symptoms, diagnosis and the treatment options. I didn’t want it to read like a novel. Really, it’s just simple to read. Go to pamphlet of information that I’ve collected. Including supplements to help you get properly diagnosed and your treatment options, as well as the vast array of symptoms that can come with this disease.
Some people don’t like referring to it as a disease or an illness, but in my eyes it is. It just needs absolutely more research and more attention paid to it, to do justice to these women around the world who are suffering on a daily basis.
Alvern: What’s the final advice you can give to all of our ladies who are listening here? Based on what you’ve learned and your vast experience. What would you advise them to do?
Alli: First of all I would like people to know that they are absolutely not alone. It can sometimes feel … It’s so debilitating. It can feel like you’re moaning to everyone in your life constantly, and you’re not. It’s not in your head. Even if doctors use that term, ghost pains, it’s ridiculous. It’s a very debilitating illness, and you need to be kind to yourself.
I would absolutely advice, first of all, if you even suspect that this possibly could be what you’re suffering from, go to your GP and just even say the word or say, “Can you refer me to someone who can tell me if I have endometriosis symptoms.” And let’s just get that box ticked. Let me get diagnosed or you can rule it out. If you do have it, there are plenty of options and there’s so much support now through Twitter groups. There are ladies all around the world who are coming together on Twitter, on Facebook. Unfortunately, they have been very upsetting post where people we have been talking with around the world have found that they’re not been listen to and they’re suffering from anxiety and pain every day and they’re in a really bad place.
So just please know that you’re not on your own and I am absolutely open to anyone wanting to contact me directly and having a rant or just crying on phone or ask me any question. I don’t care if you think it’s personal or too intimate or whatever. If I know the answer or I have some kind of experience to share I would share it. Also, just absolutely rely on your family and friends. Obviously, they care about you. Try to explain to them in as much detail what is involved in this illness if you have been diagnosed with it, so that they understand what you’re going through in more depth, and that you’re not … Either you might feel you’re being moaning or you’re complaining constantly, you’re not.
So, please just feel that the pain is valid. It’s caused by something very unpleasant. And if you can’t try to spread awareness by growing your social network or even just … I’ve tried to get into the school that I used to go to, just to share the knowledge and just talk to girls from age 16 to 18 and say, listen, if you have this symptom, if your periods are excruciating, that’s not normal. Please, the earlier you get diagnosed the better outcome.
Alvern: Yeah, exactly. Thanks, Alli, so much for joining us today. That was a really big eye-opener and hopefully, if it is we have only one person today, we’ve heard a lot. Thanks so much for taking the time to join us today. Ladies, thanks so much for listening. Enjoy the rest of your evening and enjoy the rest of the week.
Alli: Thanks so much Alvern. Thank you. Again, thank you, ladies, for listening and let’s spread the word, and hopefully, this disease can be eliminated in the very near future.
Alvern: Good point. Thanks guys. Bye for now.
Alli: Thank you. Bye, bye.
Alvern: Bye, bye.
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Alvern is an avid blogger for 10 years and the host of the Success Unscrambled podcast.
Read Alvern’s inspiring story from her eye-opening experience 3 years ago to becoming a Blogger and Podcaster with a dream to reduce illiteracy among women.