Discovering Endo: a few tips
Since I started this blog it was a decision of mine to write about endometriosis but in a more positive way that what you can usually read on the web. I remember the day I was told that I had endometriosis and even the way I was told that I had this condition as truly horrendous. So why not share all the positive and inspiring stuff I have also found along the way? For those that just found out, or simply need a bit of positive info 🙂
My Endo story started when I went to a routinary check-up with my doctor in Spain. After running a few tests he came back and, looking visibly annoyed, told me: – ”so, what are you waiting for to get your surgery? Your ovaries are huge!”.
I looked at him surprised as I honestly thought that he had the charts of another patient instead of mine and replied to him: why? is that something bad?
Then, the surprised one was him. He looked at the chart, he looked back at me, back at the chart and left the room saying that another doctor will come back to double-check. Before I could utter a word he banished from the room. Needless to say, the outfit you have to wear in these appointments are not the most flattering ones, since you are practically naked with what they call ‘ gown’ (more like a small table cloth) so I was not very excited about another doctor taking a peek. The next doctor came, checked, made a sarcastic comment about the gown (earth, swallow me now) and when I asked about the results, he told me to ask the other doctor and left the room.
A few minutes later, a nurse came and informed me that the first doctor was waiting for me in his office to talk. Oh boy, they were giving me a ”talk”. You cannot imagine the thoughts I had in those 5 minutes…and I don’t wish them to anybody. So I knocked at the door of that office and I heard the doctor asking me to come in and sit down. After making a couple of silly jokes (by the way, doctors out there, jokes are useless in these situations and only awake the patient killing instincts) he told me that I had endometriosis. He waited for a reaction from my part, but ”endometriosis” and a word in Chinese would have produced the same reaction in me.
He then proceeded to explain that endometriosis was an illness resulting from the appearance of endometrial tissue outside the womb and that sometimes that tissue transforms into endometriomas that can affect and extend to other areas (adhesions) affecting them irrevocably (that is why in these surgeries sometimes they remove more things apart from the ovaries and the uterus). He said that I had two endometriomas: one equivalent to a mandarin in one ovary and a kiwi on the other one and that I had to undergo surgery as soon as possible as they could rupture in any moment causing me worse complications.There you go, no drama at all.
After that, I started to make the jokes (why I did that? no idea! nervousness? who knows! it was him who didn’t find them funny this time). I told him that I was living in Dublin and I was flying back the next day. He looked at me again, visibly annoyed, and told me that I was risking their rupture on the plane back and that it was dangerous.
Now, looking back, yes it may have been a bit dangerous (although nobody knew for how long I had the endometriomas there), but c’mon man! I flew back to Dublin feeling like I was carrying two grenades in my hips just about to explode in the plane!
He advised me to have surgery in the next month and told me to get mentally ready to lose one or both ovaries (Hello, Menopause. Nice to meet you). As the cherry on the cake, he told me that having children was far from easy in my case. I really have never given it much thought to maternity matters, but there you go.
I started to ask around about endometriosis and did quite a lot of research on the matter. I joined a couple of associations here in Dublin of women that have this disease to learn more about it and how to deal with this new chapter in my life. And these are some tips that I learned:
- Every woman is different, whatever they say, this illness affects women in really different ways. In my case, I didn’t have much pain until the last months before I decided to have surgery.
- If you are suffering (physical or emotional pain, or both), I cannot recommend enough talking to someone: counselor, coach, psychologist, you name it. It did help me. In my last few months, I could not walk as I had so much pain and I had two colics (people call these cramps, but no way; this in pain levels is equivalent to an appendicitis, friends. You feel like you are being stabbed so it is not an easy one).There are counselors here in Dublin that even do student or special fees in case you don’t have much money: Mymind.org and special fees for online therapists in Ireland and abroad.
- Create a plan (mind maps are great for this) for your peace of mind: I found a GP here and together we organized an emergency plan to follow in case these ”grenades” I was carrying decided to rupture before the date of my surgery in Spain, in six months. I checked which gynecologist in Dublin dealt with endometriosis (as not all doctors here believe is a real illness, by the way) and my GP referred me to her in case I had to go to emergency surgery. I will write a post in the future about mind maps and how useful they are to reduce anxiety.
- Join endometriosis associations but don’t obsess over it. I joined the Irish Endometriosis Association and a couple of facebook groups. I learned a lot about the disease but in my case, I had to quit these groups. I even went to a conference and they were lovely and very helpful giving you information, but the cases that were mentioned by members and doctors that spoke at the event were so extremely bad that made me leave almost in tears thinking that it could really be my future. In Ireland medicine is only reactive and does not take prevention into the equation of what healthcare should be. It does not help that most doctors mock and ridicule this illness resulting in many women reaching a level of deterioration that leads to real horror stories. Many of them, if they are lucky enough, travel to the States where they can put themselves in the hands of specialists. In Ireland there are only a few specialists, making women all over Ireland wait way too much for a surgery that arrives already too late. I had to quit these groups as it was causing too much anxiety in me, considering my health deteriorated quite fast since I was first diagnosed. The endometriosis association in Spain felt quite different, more positive in comparison with the Irish one. The reason? Women have access to gynecologists since they have their first period, making prevention part of the equation. And that along with many more specialists, does make a difference.
- Read about it and ways to cope with the illness better. I decided to quit gluten, dairy (or to reduce it as much as possible), red meat and other foods as some increase the inflammation and others seem to raise the level of estrogen and that is what you want to avoid when you have endometriosis. It did improve my pain and my endometriomas shrank a few centimeters in the six months after my diagnosis. Doctors said that it was probably a coincidence, and they were probably right, who knows. But nobody knows why some women have this illness, why some have a more aggressive version or one that is not as bad. It seems that it has something to do with how strong our immune system is so it is worth trying out. I will add some books that helped me along with some more detailed information about what food help and why in future posts.
Please do contact me if you have questions as I will be more than happy to help. It is not easy to discover about this disease and to explain it to people, but it can get better! Promise!
Thank you for reading and hasta pronto!