Three notes right at the top:
1) This is a very long post. It wasn’t intended to be a long one but that’s how it went. I’ll forgive you for not reading it all.
2) This is a very personal post. I talk about “women’s stuff”. And body stuff. You know, vaginas and periods and ovaries and wanting to kill people. If you are slightly adverse to such things, I’ll forgive you for quietly slipping away now. I was going to password protect this one, but I think it’s important to keep it public because I know that maybe, just maybe, someone will read this and it might help them to seek medical attention. As a friend said earlier, it might help someone out there know they’re not going through the same thing alone.
3) None of the below is offered as medical advice – I am not medically trained. These are my experiences only. Please speak to your doctor if you have any unusual symptoms.
In case you haven’t read any of my health posts before, it will be informative to know that I have the following chronic conditions:
Chronic Fatigue Syndrome (CFS), Fibromyalgia Syndrome (FMS) and Irritable Bowel Syndrome (IBS)
Recently added to the list is Endometriosis (endo). This is just a “presumed” diagnosis at the minute as the only way to confirm it is through surgery. However, my recent MRI scan is pretty conclusive and I reckon moves the percentage likelihood from 95% to 99.9% – as good as it’s gonna get until a surgeon gets to take a look.
Actually, this is a terrible place to start this story.
Let’s go back to my teenage years. Those years where I was socially awkward anyway and combine that with two to three days a month where I wanted to rip the head off anyone within a five foot radius followed by five days of being doubled over in pain and things just got worse.
Looking back, I think it’s safe to say that I have always had endometriosis. Apparently the average time from first symptoms to confirmed diagnosis is 9 years. It’s taken me 15 to get to this point.
After about a year of shocking period pains and heavy periods I went to my GP. The mistake I made was in thinking that painful and heavy periods were normal.
This is just not true. And if you are experiencing heavy or painful periods, for God’s sake go and see your GP. You do not need to be in pain every month. And if you get no joy from your GP, go and try another one.
Anyway, my (male) GP at the time tried a variety of painkillers, general analgesics, and those specifically designed for period pain. Nothing worked. So eventually I was left with only one option – to go on the pill.
This fixed things. Not only did the pain go, but I was bleeding less, and periods were regular and controllable. (I remember the joy of being able to go on holiday when I wanted because I could control when my period came!)
Everything went smoothly until 2004 when I had a… thing. At the time, the neurologist called it a Transient Ischemic Attack or mini stroke. But I’ve had two more occurrences of the same thing since then and I am now thinking that it was a hemiplegic migraine. The last one, I didn’t even go to hospital for although I suspect the medics would probably advise otherwise given the associated symptoms!
In any case, the neurology consultant at the time strongly recommended that I stop taking the combined pill, give my body a rest for a while and then when I was ready, start back on the mini pill. This would give me contraceptive coverage (albeit at a lower success rate), but would reduce the risk of a recurrent TIA.
I dutifully obeyed, gave it a few months and when I started getting period pain again, I decided it was time to go back on the pill.
When I moved to Australia in 2008, there didn’t seem much point in taking the pill; I was practicing the best contraceptive known to man – celibacy! But when we booked a date for the wedding, it seemed somewhat prudent to start again.
All was well with the world: regular periods, nothing too heavy, and, most importantly, no sprogs!
Then two years ago, I suffered extreme abdominal pain. Couple this with a period that was 11 days late and my GP went into panic mode – the worst case scenario being an ectopic pregnancy that could require immediate medical attention.
An ultrasound and a blood test revealed I was in the clear but a cyst had made itself at home on my left ovary. “Nothing to worry about, should resolve itself in a week or so. Heat and painkillers. Come back if you’re still not right in ten days.”
The pain went, slowly, the period came and all was right with the world again.
Until three months later when I got the same pain. Again ultrasound revealed nothing sinister. Not even a cyst this time.
Then the next month I had more pain.
Then the next month.
Then the next month I had worse pain and it lasted for longer.
By January this year, I was in almost constant pain, my heat pack was my companion at work and at home. Overnight I would have a hot water bottle clasped to me to try and prevent me waking up in the middle of the night in agony. The pain was so bad it would take my breath away and leave me holding onto a kitchen chair for support while I waited for the codeine to kick in and the microwave to do its thing with the wheat pack.
I finally got myself off to my (female) doctor. Who told me off for leaving it so long! A referral onto a specialist Ultrasound revealed that things really were not well with the world or my uterus. And a possible diagnosis of Endometriosis was borne. As mentioned above, the only 100% way to diagnose endo is through surgery and eyeballing the implants and effects of the endo. So off to the specialist I was sent, with a warning that the wait time could be up to three months. I think I balked slightly as the Dr suggested a hormone injection to give some relief in the meantime.
The injection has worked brilliantly. It’s the injection that is used for contraceptive purposes (Depo provera) and the reason it works to relieve the symptoms of endo is that it stops the ovaries releasing eggs which begins the cycle of endometrial shedding (assuming a pregnancy doesn’t start). I have had no to low pain for the past 3 months, and as a wonderful added bonus, no periods.
Two weeks ago I saw the consultant. I was so nervous knowing that the likely next step was surgery. The whole idea scares the hell out of me. So it was with a lot of trepidation, not to mention an A4 sheet of questions, that I went see him.
I reckon I’ve hit the surgeon jackpot. Not only is he a lovely guy who is clearly extremely knowledgeable and respected, not only in his field but in surgery in general, but he’s a surgeon that seems just as happy to keep me out of an OR as he is to rush me in.
Any surgery carries risks. Surgery in the lower abdomen carries high risks (a slight miscalculation of space and the surgeon can nick intestine or bowel tissue and that can lead to a lot of complications.) A surgery for someone with CFS / FMS could put them out of action for months. Even at the lowest level of surgery (exploratory only to confirm diagnosis), the recovery time could be months. (One of his past patients with FMS spent four months recovering from a “simple” laparoscopic procedure.)
Our decision was that we would wait and see. The depo is working, the endo is not going to get worse if we leave it alone so why poke the bear and possible create problems where there are none. Or at least the problems that currently exist are being effectively masked with conservative, medical treatments.
But while we’re waiting let’s get some more diagnostic images to try and see exactly what’s going on just in case in the future we decide on the surgery route. Information being power and all, the more he knows before he cuts, the better prepared he will be.
Cue MRI scan and another ultrasound. The MRI was fine. Noisy and a tad uncomfortable, but fine. The ultrasound is going to be bad. It’s called an endovaginography. I’d invite you to look it up so you can share my apprehension but Google hasn’t heard of it. Understandable given that it’s a new procedure and one that currently only a handful of experts are trained to do.
Basically, the technique uses ultrasound to see through the vagina wall into the bowel to try to establish what, if any, endo there is present either on or in the bowel wall, or actually within the bowel itself.
Sounds like fun huh? Cue bowel prep requirements. Oh joy. This could be why I’m putting it off for a while. I’m very busy at work at the minute you see. And then there’s that other thing I have to do – a root canal maybe. Or an appointment to stick my head in a tank of tarantulas.
However, I have the MRI results back and my GP went through them with me this morning when I went for my 24 month full service and check-up. (At this point I think dignity is a word that only exists in theory when it comes to my lady bits.)
Basically the endo has stuck every possible organ to each other. Everything seems to be affected. Name any organ or structure that resides in the lower abdomen, and it’s mentioned in some way in that report. It kinda helps to explain why I was in constant and severe pain. It kinda makes me really nervous about what the next step is though.
The GP mentioned that the scar tissue that exists due to inflammation could obstruct the bowel so I need to be alert for bad abdominal pains combined with vomiting and high tail it to ED. I’m no medical expert, but I do know that a bowel obstruction isn’t something you mess about with.
I see the surgeon again in October. This gives me a chance to work up the courage to do the ultrasound. But it also gives me time to stew on the possible outcomes of this whole thing.
Can we continue to “wait and see” given the extensive nature of the implants, adhesions and scar tissue? Are there increased risks of doing nothing versus going into surgery? How long will it take for the depo to stop controlling the symptoms and allowing me to live “normally”? How will this affect me in my older years if we do nothing now? Why me?
That’s the big question going through my head today: why me? It’s such a self-indulgent, self-pitying, stupid and pointless thing to say but there it is. With everything else (CFS, FMS and IBS) don’t I have enough to deal with? Oh yes, and the endo will make the IBS symptoms worse, and the IBS can imitate endo pain, making it one lovely negative feedback system in itself.
And this at the end of two weeks where I have felt the best I have been in about four years. I’ve been out walking, I‘ve been eating healthily, I’ve had more energy and motivation to do stuff (except work!). But I know that within me lurks this disaster zone that I suspect can’t stay how it is. I suspect at some point I will end up in surgery and it won’t be pleasant and I will have a protracted recovery period. There’s some positivity for you.
I do wonder how different things would’ve been if my GP when I was a teenager had done a bit more work rather than just throwing me on the pill. Or if I’d known what I know now and had pushed harder for further investigations to be made rather than accepting what seems to be a fairly standard GP answer. It is highly likely that the pain I had then was the first symptoms of endometriosis. I wonder if we’d done something then, if things wouldn’t be so bad now. Or if I’d just ended up having more surgeries through the years to keep cleaning it up.
You see, that’s the other thing. There is currently no cure for endometriosis. There are ways of controlling it. There are some very effective ways of controlling it. But no cure. Even a full hysterectomy isn’t a guaranteed cure as there is the chance that some implants are left and will cause problems. A chance that increases the more the implants have spread around the body. Current figures put “cure”, i.e. lack of symptoms, at 70% at three years following surgery. And the more severe the endo is to start with, the greater the chance repeat surgeries are required.
So another chronic condition that has no cure and involves pain and fatigue. Just like the CFS and FMS.
It really is enough to make you sick of being sick.
For more information you can try the following web pages or visit your GP: