My new OBGYN is brilliant. First consult today and she spent a whole hour with me ‘getting to know you’ as she put it. Working her way through my very complicated medical history, and specifically complicated gynecological history. Checking facts carefully. Talking through medications. Asking lots of questions.
She said she wanted to get a picture of ‘me’. As a whole person. Before she even began to think about the most appropriate treatment plan.
Wow. Just wow. She embodied everything a doctor should be. She had a caring manner, she listened and asked lots of questions. Nothing was irrelevant. Unlike other specialists, for example my neuro. He only wants to know about my neuro symptoms. My gastroenterologist only wants to know about my gastric symptoms. And so on.
My ObGyn wanted to know all about me. Because, as she said, some symptoms may appear to be coming from one place, but are actually caused by something else. So she wanted to know about it all.
And she included my psychological well-being as well. She asked me how I felt about various symptoms. How they affected me emotionally, as well as physically. I needed this approach, because I did not like the options in front of me. I needed someone who was going to take the time to talk through it all. Not just make a pronouncement, with a ‘do as I say or I won’t help you’ attitude. Which I have encountered often.
I have had a difficult menstrual cycle forever. I have always suffered a lot of pain and heavy bleeding. It’s just ‘normal’ for me. Something you get used to, and work around, and manage. But for the last few years, it has definitely been getting worse. I do remember back when I did karate I always worried about wearing our nice, crisp WHITE Gis. The fear of leakage there was huge. Hard to hide red on white.
I was diagnosed with PMDD in my early 20s. Pre Menstrual Dysphoric Disorder. Essentially extremely severe PMS. I used to suffer intense depression, anxiety and rage for half the month.
I hid it well. No one knew. I didn’t discuss it. I just wrote angry songs with over driven guitars and screamed the lyrics like Courtney Love. Good therapy. If people had known what was going on in my head they would have been afraid. Very afraid!
But I managed it. I had a great poker face.
I believe you can’t help what you feel. But you do NOT have to act on those feelings. And nothing gives you the right to abuse other people. No matter what you are going through.
I tried birth control pills, as the accepted treatment, those made me feel much worse. I tried Depo Provera. Worst idea EVER. That was about the time I realised that doctors weren’t all powerful gods who knew everything. They were just people, doing a job. Some did it well, others did it badly.
Some made really bad mistakes because they were ignorant AND arrogant. Devastating combination!
Not much was known about PMDD back then. Not much more is known now. I did as much research as possible. I didn’t trust doctors anymore, because they didn’t know much. And didn’t care much. I was misdiagnosed as bipolar when I did try to discuss it with a GP.
That was when I first learned that I needed to take responsibility for my own health. Take advice from doctors, but check it out for myself. Make my own decisions. Get educated. Learn about the treatments they were suggesting and not just blindly trust. And be my own advocate.
For me, my hormones were a huge amplifier. I had a lot of problems in my life back then. Real problems. Tough problems. Bad situations. No easy fixes. When the hormones kicked in (luteal phase), I would fall into hopelessness, self-destructive patterns and depression.
Some people take out their moods and rage on other people. I’ve never been like that. I’ve always turned everything inwards. I only ever hurt myself. Directly at least.
When the hormones lifted I could cope again.
But nothing was fixed. The problems remained hidden. The hormones didn’t create my problems, they just rendered me unable to cope. Think of it like those people who get drunk and suddenly start crying into their red wine. The problems are real. They can cope with it all when sober. Pour alcohol onto the situation and their problems come to the fore and seem insurmountable.
Hormones are similar, except you can’t choose to not have them. Unlike that alcoholic drink.
To fix the PMDD I had to fix the root causes. Deal with actual issues, because they were the same issues every month. The hormones were just a catalyst.
In the absence of my hormonal, heightened emotional state, I could sweep all the problems under the carpet. And cope. But the cycle was never going to change, unless I changed it.
Eating a clean diet, lots of fruit and vegetables, helped. Exercise helped a lot more to manage the emotional symptoms. The gym was a far better place to leave the anger and anxiety and depression. Or the open road. I used to run. A lot! That’s where my love of exercise was born.
But by far the most important thing was to deal with the real issues. The only way to fix the problem.
So I slowly but surely started fixing my problems. One thing at a time. Broke it down into little pieces and tackled it slowly. That wasn’t easy, and it took a good while. It involved disappearing, cutting contact with everyone in my life and creating a whole new life. No small task. But that’s another blog post.
Once I was through that, my PMDD was reduced, more like PMS. Less stress in my life meant less hormonal hell. I’d taken care of the problems. But I still had the bleeding, the cramping, the bloating. Luckily I was an IT nerd, so I could access the internet at work, before it was commonly available.
Finally I found some information on PCOS. Polycystic Ovarian Syndrome. I went to my doctor. She ran tests and confirmed it. I started treatment with metformin and most of my hormonal problems were resolved. My cycle regulated, I started ovulating, much lighter periods and I experienced ‘normal’ PMS, like almost every woman does. A bit short tempered one or two days a month. I was in my late 20s by this point. And in a stable, happy relationship.
After I had kids, things were better for a few years, but by the time my oldest child was three, the heavy periods, cramping, bloating were back, and they were bad. I didn’t tell anyone though. Again, I just managed it. Diet. Exercise. Exiling myself when my emotions were overwhelming. It meant a few more days of the month when I couldn’t have sex with my husband, but he had pretty much lost interest in me by then, anyway.
Anyway, fast forward another ten years, and I finally got to the point where I am fed up. Two days of extremely heavy bleeding. As in not leaving the house because the bleeding was too heavy. And half the month of cramping, abdominal pain, bloating. I could gain 3kgs over the course of two days. Fluid retention, sure. But uncomfortable and unpleasant. It made going to the gym harder. Some days I’d want to double over in the middle of a group exercise class. Sharp pain. Annoying.
Add it to the rheumatoid arthritis, and it all just got too much.
Off for an ultrasound. And a new diagnosis. Adenomyosis.
It’s funny, because before something has a name, a diagnosis, you just put up with it. You think its normal, something everyone has to deal with. Once you know that there is a name for it, and a treatment and it CAN be fixed, you want it gone. Now. Except in this case the treatments aren’t simple.
There are conservative treatments, but I’m doing them all already. Taking Naprosyn, taking iron for anemia caused by the blood loss.
Progesterone decreases menstrual bleeding. But given my experience with Depo Provera there is no way I am ever putting any form of progestin into my body again. So progesterone injections, implants, pills, and the mirena coil are not an option for me.
There is also a medication called Tranexamic Acid that stops bleeding. But it’s contra-indicated in anyone who is a stroke risk. Being that my neuro’s best guess is that I have had two small strokes, and I’m on blood thinners to prevent another, that option is out too.
So that leaves hysterectomy. Which is why I had a total meltdown this morning.
I can’t cope with a big surgery right now. I just can’t. The last 12 months have been too much for me to cope with. I can’t do any more.
My OBGYN was very sympathetic. And sensitive to my feelings. She said there’s another option.
It may not work at all. It may help a little bit. Or it may help a lot.
Considering my medical history, rheumatoid arthritis, prednisone, blood thinners, immune-suppressants and all the complications I had from my last (very simple) surgery, she said she’s not that keen to operate on my either. Not unless she really, really has to.
I’m a complicated patient. If I were healthy, she would recommend I have they hysterectomy when I felt ready. No rush. Nothing about Adenomoyosis is dangerous. It is just painful, and messy. She said one day I will be more fed up with dealing with the symptoms than I am afraid of the operation, and off we go.
But, for me, for now, she recommended the other option. And Endometrial Ablation.
It’s a very simple procedure. It’s not surgery, there is no cutting. They insert a wand through the vagina into the uterus and burn out the endometrium (the lining of the uterus). You can never have kids after an ablation, because your uterus will never again support a pregnancy, but that’s fine with me. I have no plans to ever have sex again, let alone have kids!
Once the endometrium is gone, no more bleeding. Or vastly decreased bleeding.
Except with Adenomyosis, in which the endometrium invades the muscular wall of the uterus (the myometrium).
It is like endometriosis of the uterus. The endometrium is supposed to only be the surface layer. But with Adenomyosis, the endometrium goes deeper, into the muscular uterine wall. After the endometrium has been burned away via an ablation, how successful the procedure is will depend on how much endometrium remains buried in the myometrium. Because this layer will still bleed every month in response to the usual cyclic hormonal changes. If it’s deep, then the ablation won’t be successful at all. There is no way to predict from the ultrasound.
My OB said there’s a very small chance that it will be completely successful, and I will never have a period again, and no more pain.
More likely my bleeding will be lighter, less cramping, less pain. Basically make life better for a while, but it will get worse again. And a hysterectomy is still no the cards one day. No idea when. Could be a year, could be a few years. It’s most likely just delaying the inevitable, but given my emotional state right now, that sounds great.
Or, there is a small chance it won’t help at all. But then at least I know I tried every option and I’ll be more at peace with the hysterectomy.
Having a hysterectomy has brought up a range of issues I had no idea that I had buried. My rather brilliant psychologist has helped me unbury them. And I will work through them. And if I need to go there, I will be ready.
So that’s it. From a messed up, panic attacked basket case this morning, I’m calm and happy with this plan of action.
Best part is that my OB wants to get me sorted quickly. I’m booked in on Monday, 19th. Six days away.
And I can’t wait. Every bit of pain reduction means a better quality of life. If even partially successful, I should have less back pain, less bloating, less bleeding and be more able to exercise, get out and enjoy life. There is even evidence that endometrial ablation reduces PMS. Bonus round!.
So I’m hoping. And I’m very glad that I found THIS OBGYN. She implied that most would go straight to a hysterectomy considering my age and with the success rate on Endometrial Ablations with Adenomyosis.
I have googled, and there are many people saying it didn’t work for them at all.
But google is NOT a representative sample! It’s the same as the RA community. The people who had successful ablations aren’t posting. They are off being very happy somewhere. The internet is NOT a good indication of success rates. There is a huge bias towards unsuccessful treatments. Because the unsuccessful are those that still need help.
So I’ll accept that it might not help at all. But it’s reasonable to expect that it will improve my symptoms to some extent. How much improvement remains to be seen. There is no way to predict. But being that it’s a simple, minor day procedure, it’s worth a shot.
My OBGYN also said that she didn’t think I would have a successful outcome with a hysterectomy in current emotional state. I agree completely. I don’t want a major surgery. I am not ready. I don’t have the necessary support systems in place. The ablation will most likely buy me time and make life a little more liveable until then. I have to wait until I am ready.
In the meantime, this is a good ‘bridge’. And I am incredibly grateful to have found a doctor who treats the whole patient, not just her little ‘specialty’ part of the body. If only they were all like that.