This is a post I’ve long been toying with writing.
It’s not a subject I discuss widely with many people. In fact, I discuss it with a few family members and maybe one or two close friends, and even then I don’t go into the full details. I’m not ashamed to talk about it, but to me it’s deeply personal. I don’t like to complain and I don’t want to look like I’m searching for attention or sympathy. However, with March being Endometriosis-Awareness month, I decided that maybe it was time to tell my story. I’m also collaborating with a beautiful soul, Yolandé, from the blog Sheer Empowderment, as the two of us try to bring more awareness for this chronic disease.
I have endometriosis. When I was finally diagnosed with the disease, during a surgery in August 2016, I was at stage III.
But firstly, let’s get the basic facts straight! Seeing as so few people are aware of the disease itself (only 20% of the general public have even heard about it), I’d like to lay down the basic knowledge for you.
What is endometriosis?
When a woman goes through her monthly cycle, the lining of her uterus thickens, and then sheds as her monthly period comes. This lining of the uterus is called the endometrium. However, sometimes endometriosis occurs when this lining grows in areas outside of the uterus. It grows on areas such as your ovaries, fallopian tubes, bladder and bowels, as well as the tissue lining your pelvis. Although it’s unusual for the endometrial tissue to spread beyond your pelvic region, it’s not impossible.
When a woman goes through her time of the month, the endometrium in her uterus that has grown and thickened over the month will shed, resulting in her bleeding. Any endometrium in any other areas of her body will do the same – after having thickened, it will become inflamed and painful. The tissue that then breaks down and sheds has nowhere to go, so it becomes trapped in your pelvis. These deposits or adhesions can leave scar tissue behind, and cause organs to stick together. In severe cases, this can cause the fallopian tubes to become blocked, and cause cysts to form on the ovaries. This often leads to infertility.
Who can get endometriosis?
Endometriosis can occur in any girl or woman who has a menstrual period. It is more common in women between the ages of 30-40, but any female between puberty and menopause is susceptible to it. It is very rare for post-menopausal woman to have endometriosis, but it is possible.
There is also strong evidence to suggest that endometriosis is genetic. If your mom suffered with the disease, it’s more likely that you will too.
1 in 10 woman are suffering from the disease and it can take an average of 7,5 years to even be diagnosed.
What are the symptoms of endometriosis?
There are so many different symptoms of endometriosis. Here are the most common ones:
- painful periods (dysmenorrhea)
- killer cramps
- pain in the lower abdomen before and during menstruation
- heavy menstrual bleeding during your period, or bleeding between periods
- pain during or following intercourse (dyspareunia)
- painful bowel movements and abdominal pain that includes diarrhoea, bloating, gassiness or cramps
- bladder disfunction
- lower back pain that might occur at any time during your monthly cycle
- chronic fatigue
- chronic pelvic pain
- weakness, numbness or pain in the nerves
- personality changes (depression, anxiety, stress, apathy)
- decreased immune system
Some people have no symptoms, or very few, while others suffer intensely with several or all of the symptoms. It largely depends where the endometrial deposits are. It varies for each person. For the sufferers, it significantly impairs their quality of life.
Is there a cure for endometriosis?
There seems to be a lot of debate on this amongst different gynae’s and specialists. Some claim that getting pregnant will cure you, others claim that just going on the contraceptive pill will. I’ve spent a lot of time reading a book by Dr Tamer Seckin (“The Doctor Will See You Now : Recognising & Treating Endometriosis”), a specialist in the disease. He claims that the disease is incurable but highly treatable.
There are several options of treatment for the disease. Each gynae or specialist may suggest something different, and some treatments will work for one woman but not another.
- Continuous oral contraceptives such as the pill
- The Mirena (progesterone based therapy)
- Visanne (also progesterone based)
- GnRH-A, or Gonadatropin Releasing Hormone Agonists such as the Zoladex implant
- Surgery (laparoscopic surgery with lasers or in the case of Dr Seckin, laparoscopic excision surgery)
My gynae has told me that pregnancy can work to help ‘cure’ the disease, and that a lot of women who suffer will find it fizzles out after pregnancy. For some woman, the contraceptives or progesterone therapy will work.
Will I be able to have children?
Nearly half of all endometriosis sufferers will battle with infertility. Early diagnosis can prevent the disease from spreading further. Endometriosis does not always lead to infertility, but it is very often related to it.
Is endometriosis just a bad period?
No. It is most definitely not. It is often misdiagnosed as a ‘bad period’, cysts or IBS. Most of these misdiagnoses are due to lack of awareness or education on the disease. The ‘pop a pill and get on with it’ mentality towards women’s health and their periods is absolutely ridiculous. You will know if something is not normal, and this kind of pain each month is NOT normal. It’s normal to occasionally have a bad period where your cramps might be a little worse than normal, but if it’s continuous or gets worse, then you need to get it checked out. Regular checkups with your gynae are key.
All clued up now?
If you have any other questions, please feel free to ask me – you can comment below or email me. You can also check my list of sources where a lot of other websites will go more in-depth for you.
Let’s get personal…
I started out having painful periods. I never had one that just passed me by without pain or discomfort of any kind. But, as a girl, you’re told that period pain is normal, it’s completely fine to feel sore and miserable at that time of the month. Society tells you this, chick-flicks tell you this and even doctors insist that you’re fine. I always thought that every woman or girl suffered the same level of pain, and that I was just being a wimp.
I went on the contraceptive pill in Matric, as I suffered with acne. Miraculously, my periods also became lighter, shorter and I had much less pain. At least for the first few years. I was on the pill for 12 years.
My mom drilled into me early on that I must never miss an annual gynae check up. She suffered with the disease badly when she was younger as well.
After about 6 years on the pill, I noticed that every other month or so I’d have a really bad period. The pain was really bad, and I was really tired. I recall complaining to my gynae at each annual check up that I suffered with bad periods every now and then, but he brushed it off, saying it was normal. The years went on and the pain got worse and worse with each month, and every time I’d complain to my gynae, he said he couldn’t see any reason for it on the scan, or feel anything during my examination. He didn’t want to do surgery unnecessarily, and because he couldn’t see or feel anything, he brushed it off. Eventually the pain was so bad in the beginning of 2016, that I’d be in agony, popping strong painkillers and anti-inflammatories like they were candy. I’d carry a microwaveable pack around with me to soothe my abdomen, and I’d be absolutely exhausted. I’d also been suffering with depression and anxiety for a few years, and on medication for that. I complained (yet again) to my gynae, insisting that something was wrong, and eventually made another appointment to go and see him in the August. He decided that perhaps it was time (finally) to go in and take a look at what was potentially causing the pain.
He insisted that it was just to check, that perhaps it might be a small patch of endometriosis, if anything at all. I was told I’d come home the same day, it was a small laparoscopy to check the area out. This ended up being a much longer surgery than was necessary, as I was apparently at stage III, with patches of it in many different places. There was also a cyst on my right ovary, caused by the disease, as well as some adhesions there. I ended up spending the night in hospital and being off work for a week. I also had a Mirena placed, and was put on Visanne for 3 months to counteract any possible endometriosis that they hadn’t gotten rid of completely.
Less than a year later, I was suffering with pain (although not quite as bad) and I was bleeding slightly every couple of weeks, despite the Mirena that the gynae had placed. I thought it was time to possibly find a second opinion. That gynae (my now current one) immediately found a patch of endometriosis that had grown back just in the external scan, in the tissue between my uterus and my bowel. He put me onto Visanne yet again, saying that it should be corrected after that.
Three months after this, I was horribly low and still in pain. I was having mood swings second to none, snapping at my family and my husband. I had also gained weight very quickly. I emailed my gynae asking if there was a chance I was having bad side effects from the Visanne, and asking if there was any other option. He then organised the records from my previous surgery with the other doctor, and phoned me back that day. I was told that not only was the double dose of progesterone therapy (Mirena and the Visanne) probably making the side effects worse, but that if he’d seen my results, he would not have suggested the Visanne anyway, as it wasn’t enough for my particular case of the disease. He told me that surgery in that area was tricky, and he didn’t think it was a good idea, but he had one other recommendation (other than trying to get pregnant – something which my new hubby and I are not quite ready for yet). He told me that there was another treatment called Zoladex, which was very very aggressive, but he’d had amazing results with.
Now, after googling the Zoladex, I freaked out and had a minor meltdown. When I showed my hubby just exactly what it was all about, he insisted on us seeing the gynae and chatting to him about our options. Unfortunately, we were told that if we wanted to have kids, and weren’t going to try immediately, then this was his best suggestion. His words to my husband were ‘if it was my wife, and we wanted children at some stage, this is what I would do’.
The treatment has so many cons to it, you wonder what the pros could even be. The first con is that it’s very pricey, so it’s not an option for everyone. Our current medical aid is just a customised hospital plan, so while it does cover a lot of options, unless we update it to a chronic plan, it won’t cover anything to do with endometriosis outside of surgery. Zoladex is an implant that is deposited into the tissue of your abdomen through an injection, and I’ve been put onto the 10.8mg one. It was a 6 month course, with 1 implant inserted every 3 months. At over R6000 per implant, plus the cost of the sterile tray with the local anaesthetic (you have to have a shot of local before they can inject it in, as the needle is that big), it is not cheap in the slightest. We were lucky that we were in the position to pay this, and I am so grateful that we were. It made a big dent in our savings though.
Zoladex is used for bad cases of endometriosis, but it’s also used as a hormonal form of chemotherapy for people who suffer from breast and prostate cancer. It’s INCREDIBLY aggressive on your body. It’s a GnRH-A (a Gonadatropin Releasing Hormone Agonist) – in the treatment of endometriosis, it basically stimulates your ovaries to produce more estradiol (the strongest form of estrogen) in the first phase (between 1 and 14 days, but it can be longer). In the second phase, anywhere from the 7 day mark, and all depending on your reaction to the drug, it shuts down the hormones sent from the pituitary gland to the ovaries. Basically, your estrogen levels drop sharply and very quickly, and your body is sent into a faux menopausal state. My gynae explained to me, that this way, with the estrogen not present, the growth of the endometrial tissue will slow down and shrink. Your ovaries are basically put on hold. They will start up again as per normal, after the treatment is over.
The most commonly known side effects are:
- Hot flashes
- Increased sweating
- Mood changes
- Vaginal dryness
- Decreased libido
Basically, you’re going through menopause. There are also other side effects, that aren’t as common:
- Decrease in bone density
- Bone pain
- Hair loss
There are so many other suggested side effects and complications.
Right now, as this post goes live, I’ve just about finished 5 of my 6 months of this course of treatment, and had both the implants already done. The injection site, where they insert the implant, can be swollen, bruised and very very sore. The first one left me so bruised, it looked like I’d been kicked in the stomach by a horse, but the second one was smaller. Both left me sore and very tender in my abdomen for a few days afterwards too. I also have a small scar from the second injection.
As for the side effects? I am not going to lie to you, I’ve been through 5 months of absolute hell. I have a month left, and a check up in June, and I am counting the days until the end of April, when this implant will start wearing off and the hormones return to normal. The first month and a half were the absolute worst. As the estrogen rises for the first phase, I had the worst mood swings I’ve ever had. They were uncontrollable, and could result in me lashing out at my husband or my family for absolutely no reason, or they left me crying at any time of day or night. I wanted to be left alone. I was tired, but not just tired – bone deep, soul sucking exhaustion followed me everywhere. I was excessively bloated, was retaining a huge amount of water and I had abdominal pain that went on for 2 solid weeks before it started to ease off. And then, the menopausal side kicked in. Hot flashes are not just a moment of heat passing through your body. It’s like a cross between a flush of heat and an anxiety attack, and it rises in your chest and face very quickly. I had them CONSTANTLY. It became a joke, in that I started carrying a hand fan around in my bag, and my sister even bought me a fan that spritzes water on your face at the same time. The mood swings have remained the whole time, but they’re not as bad as the beginning and I’ve started mastering them a bit better in the later months.
However, I have had to go onto anti anxiety and mood boosters for the remainder of my treatment, and I’ve been diagnosed with stress-related IBS, as well as had a bad bladder infection. I’m also still retaining water badly. The low mood was so bad and I started having panic attacks again, something I haven’t had in years. Another lovely addition to the cons? Low libido. As a woman who hasn’t even been married a year, I’m meant to still be in my honeymoon-phase. Well, never mind the ‘low’, it’s non-existent. I do think this has put a strain on my relationship, even though we’ve both tried to talk it out, but it’s not ideal for any relationship, never mind a new marriage. I’ve also had BAD hair loss. So bad that my hairdresser tried to hide how much of my hair was falling out on my first appointment with her after I started the treatment. I knew it was a possibility, but I wasn’t prepared for just how much hair would be in my brush each morning (and I cried over this several times). I eventually had to cut a lot of my length off, as my hair started to look thin and wispy. My skin has suffered too – it’s been horribly dry on my body, and dehydrated on my face. Breakouts have been a constant on and off too. And I’m still constantly, constantly tired. I have had to say no to going out and seeing friends more than once, as I just don’t have the energy left in me at the end of the day.
To me, this treatment will be worth it, if it helps reduce the disease, but it will be even more worth it if we’re able to have no issues when we start trying for babies. I already know that it might be harder, and it’s something I worry about daily. My hubby has constantly insisted that this treatment isn’t just for us to have babies – he said if it’s something that isn’t meant to be for us, then it isn’t meant to happen that way. He’s more concerned about me having a better quality of life, and not being in pain or sick from the endometriosis. I think that even though this Zoladex treatment has caused me so much pain and stress, has wreaked havoc on my body and my immune system, it’s been very hard on him too. I’m looking forward to finishing this course of treatment – being able to enjoy the cold of winter or have a glass of my favourite red wine without the hot flashes will be amazing!
I’m this honest about the treatment, and not because I’m looking for sympathy or attention. It’s because you have to know the harsh ways of dealing with something like endometriosis. I want women who are suffering from endometriosis to have a voice, and know the different treatments available to them.
What advice would you give to someone who thinks they might have endometriosis?
Ask your doctor to check for it specifically. If they don’t want to or refuse to, find a new doctor.
What are some tips to deal with the sometimes excruciating pain of endometriosis?
Some tips to just deal with it day to day? On bad days, a very good pain killer and a microwaveable wheatbag or hot water bottle are my best ways to get through it. I wish I could suggest something better, but that’s what I had to do for years, and often there is no way that you can just stay home while the flare-up lasts. Most endo-warriors fight through it and carry on with their lives, and you wouldn’t even know that they were suffering with the disease.
There are also many who suggest that a certain diet can help with endometriosis, but I am of the opinion that this will just ease certain symptoms as opposed to actually dealing with the disease itself.
What has been your experience with medical professionals when it comes to endometriosis?
Unfortunately, as a whole it hasn’t been good. Most doctors will trivialise the pain that sufferers of endometriosis go through. I don’t know if this is just a combination of lack of awareness and lack of education. I also find that male doctors in general (although there are exceptions to the rule) will trivialise this disease more than others. Doctors are also very quick to say that a hysterectomy is the only cure, but this is NOT a cure. Find a doctor you trust, and who listens to you, no matter how many you have to go through to find them.
UPDATE – July 2018
I have since had my checkup, and my doctor has cleared me of endometriosis for the time being. He’s told me that this could now cause the disease to ‘fizzle out’ as such, and not come back. He has said if we want to try for children, that we’ll have a window period of 6-24 months where it shouldn’t be a problem.
Unfortunately, I haven’t felt a complete return to normal just yet. It’s now nearing the end of July and I still battle with mood swings, hormonal breakouts, some hair loss and a low libido, but with each week that passes I do feel it’s starting to get better and better. The doctor said it could be several months before I feel 100% myself again.
UPDATE – March 2019
It’s now been 10 months since my implant finished. I am still clear of endo, but am still suffering from the side effects of the Zoladex treatment.
The hair loss has almost completely gone – my hair just needs a lot more TLC than it did before. The mood swings, hormonal breakouts and low libido have not completely gone but are getting better – just a lot more slowly than I would like. I still suffer with this every now and then.
I still battle with exhaustion, which has been put down to very low vitamin B. I’m on a course of one a week for a month now, and from then I have to have monthly Neurobian shots. While I’m feeling better than I did, I’m still very tired. This isn’t helped by my overly full schedule – but I can’t keep putting my life on hold because of the after effects of this treatment.
While I’m still not 100% back to my usual self, the improvements are getting there, just at a glacial pace. I feel better than I did since my update in July, but one might assume I’d be 100% better by now. I’ve been told to not be so hard on myself, and that as long as there is SOME improvement that’s enough.
My one major problem is the weight I gained on the treatment. I’m still trying to shed it. I’ve been gyming 3-4 times a week (and not just playing at it – I do it properly) since the beginning of January. I’ve also started eating much better, have cut down on sugar (I do have a small cheat every now and then) and processed carbs. I try and not eat bread at all (I think I’ve had bread maybe once or twice since the beginning of the year) and if I eat carbs, it’s wholegrain rice, crackers or pasta, which I still have only a couple of times a week. Lots of veggies, protein and some good fats and fruits. I drink enough water and include as much fibre as I can. Yet my weight is only shifting VERY SLOWLY. Some days, my stomach looks like I’ve not lost anything at all – a result of the anxiety and stress related IBS that I’m still suffering from thanks to the Zoladex. Some days I feel much lighter. And then some days I feel puffy and bloated all over. One thing I know for sure is that the cause of this is the hormones – and that they’re really a bitch.
Once again, if you have any further questions, please feel free to comment or email me. I’m more than happy to chat!
Please check out Yolandé’s post on endometriosis HERE too! You can also find her on Instagram at @sheer.empowderment