Even though I wouldn’t call something that doesn’t actually treat the condition a treatment, you can see from the title that my next series of “THIS WEEKS FEATURES” are focusing on the different treatments I have been on for each of my conditions. Why? Well I know that when I was first diagnosed and offered various medications or treatment, I spent a lot of time Googling or using online forums to try and get to know what they were really like, so if these series of articles provide a bit of insight for someone else, then it’s done its job.
My main feature article on Endometriosis can be found here, so feel free to flick back and fourth between the two. As you may have read, there are a variety of treatments for Endometriosis, so this is purely my experience and the ones I have been on.
Probably the big one and the most well-known one, a laparoscopy is a surgical procedure where several small cuts are made on your pelvis and abdomen to gain access to your inside. For Endometriosis sufferers, it is used to ablate or excise any Endometriosis growths and cut away any adhesions. The preferred and gold-standard treatment is excision, because this enables the entire growth (and some of the tissue beneath it) to be removed, preventing it from simply growing back. Endometriosis does, of course, grow back, but the rates are supposedly less.
I have under gone 3 laparoscopic surgeries for my Endometriosis. The first was actually to diagnose it – Endometriosis can only be diagnosed this way. I have had ablation for my first surgery only. This was done by a general gynaecologist rather than an Endometriosis specialist – I didn’t know any better and you may be surprised to know that I was wasn’t fighting for a diagnosis of Endo, it was just something my gynaecology thought about after many other things I had tried and undergone for my symptoms made no difference. The second two were both excision surgeries done by specialist, my last one being less than 6 months ago and was a very long operation.
Laparoscopic surgeries are inevitable for us with Endometriosis, and unfortunately, my symptoms have returned and this is a common complaint among other Endometriosis sufferers I know. The first one gave me relief for about 6 weeks, the second one about 4 weeks and the third was a matter of days. I have also suffered with wound infections and other post-op complications, but whilst they work to remove as much Endometriosis as possible, they don’t seem to provide me much relief.
I’ve been on a variety of hormone-based treatments even before I was diagnosed.
I was taking the combined pill (the type of pill that contain both oestrogen and progesterone). I first went on it because of my period symptoms (and yes, they were always advised as “normal” by my GPs) and was on it for many years. I never seemed to get any side effects from it, but to be honest I didn’t necessarily know any different. Unfortunately, it got to the point that I was bleeding pretty much throughout the montha and my periods remained as heavy and as painful as ever before.
Combined pills are not necessarily the best option for Endometriosis patients due to the fact they contain oestrogen, which “feeds” the disease growths. I’d say the only positive was the fact I had no side effects from it, and when I came off of it eventually, my natural periods started very quickly.
The Mini-Pill or progesterone-only pill was something I only went on for a matter of weeks. I was advised to use it after my Endometriosis diagnosis as it would control the growth and stop it returning. As with the Mirena, the side effects were more noticeable, particularly my mood and getting migraines. I wasn’t able to tolerate it so was taken off it.
Mirena Coil – IUD
Oh god, this thing was literally my worst nightmare. I can’t remember exactly why I got it inserted, but I think it was something to do with my gynaecologist trying to figure out if my symptoms were related to my menstrual cycle or not.
For those that are unaware, the Mirena Coil is a plastic device that is inserted into the neck of the womb that is a form of contraception. It either stops periods altogether or gives its users very light ones – very much patient dependent. It is a progesterone-only device, so the side effects centre around things like acne, hair growth and mood swings.
Personally, I didn’t like it at all. It did stop my periods, and my symptoms eased, but I wasn’t comfortable with not having periods – it got to the point I felt so bloated and heavy that I just wanted it out in order to get rid of that feeling. I also suffered with bad skin that became oily and much more spot-prone, and felt my mood dipped quite often. It was also absolute agony having it inserted – I can’t lie about that. It was the worst pain I think I had ever experienced (they literally peel your cervix open). Having it removed was easy and pain free, and as soon as it was out of me, I felt such a relief throughout my entire body.
Medical or Induced Menopause
This was first suggested to me at one of my earlier specialist appointments. I really didn’t like the sound of it and if you’re like me, then you’ll read a lot of horror stories about the drugs they use.
Basically, you are given a monthly or three-monthly injection a drug which is a gonadotrophin-releasing hormone (GnRH) – although currently in the US an oral drug is being trialed – which puts the body in a menopause state, switching off the ovaries.
This was the most effective form of treatment for reducing my symptoms, particularly pain. I was advised to try this drug as my Endometriosis was growing at a rate so fast my consultant was worried. I was in the menopause for 9 months and for that time is was pretty much pain-free. Obviously, my periods stopped so I didn’t experience an menstrual symptoms either.
There were side effects though; the typical menopause ones such as hot sweats, aches and migraines, as well as things such as acne and a bit of weight-gain. I came out of the menopause before my wedding as for me, the menopause side effects – particularly hot sweats – did not ease up at all and I didn’t want to experience this on my wedding day.
It did seem to have a bit of a prolonged effect though, as my pain didn’t return right away and my periods took forever to come back. This is the one out of all of them that I would recommend to other people, especially as during my last operation it was evident that it had slowed the growth down.
When it comes to choosing or being advised on a treatment for your Endometriosis, make sure you have done your research because I have found that being prepared has made not only the decision easier, but going through them too. Don’t be afraid to ask questions either – it’s your body after all!