I am managing. It’s 2015 and I am hanging in there. I have learned a lot about endometriosis in the past four years and I feel like while we may not be best friends, we have made peace and we live with each other. If I think of the time before diagnosis, I can see how much my worry and concern added to my stress levels. Now that I know what is the matter with me and why I have the symptoms I have, I feel in a much better position to deal with them.
I accept my hot water bottle days on the sofa. I accept that for 7-10 days a month I have a period that impacts my life, but at this point, only the first 2 days are quite bad. The rest of my period I feel tired, I'm really moody and my energy levels are low, there is a constant base pain, but at least I'm not in agony. The agony tends to just be the first two days.
For the other three weeks, I'm just a normal woman leading a normal life. You would never know there was anything wrong with me and most people I know have no idea what I go through every month. When I do share, I realize very quickly that unless you have endo, it is hard to imagine the pain. People listen, but I know that wanting them to truly understand would be too much to ask. How could they?
I plan holidays and social outings avoiding my period days and am lucky enough that they are extremely regular. Using a period app, I know exactly when I'm due and know if I can accept an invitation to a party or not. My friends are used to me declining invites or leaving early because "I've got my period".
In addition to a Vitamin B complex, multi-vitamins and magnesium, I take various other supplements that seem to at least help contain the illness within a parameter that is manageable. If it doesn't get worse, I can get myself to my natural menopause.
I take Serrapeptase, an enzyme that helps the body to deal with scar tissue. It basically removes dead tissue. I imagine the enzyme gobbling up the internal scarring and adhesions caused by my endo. I really feel the Serrapeptase makes a big difference, even though I am aware it may just be my imagination. Nobody can see endometriosis. The only way to properly diagnose it is through laparoscopy. This is why it often takes 8-10 years for women to get an actual diagnosis. No ultrasound or scan can detect it.
I also take two herbal remedies which help to balance your hormones. One is called Agnus Castus, the other Lady's Mantle. I take both as a tincture in a little water daily. Lady's Mantle is a herb I actually discover grows in my garden. It is an ancient medicinal plant that has been used for centuries for any "female ailments". It is said to "wrap itself around a woman like a protective cloak or mantle, hence its name.
My kitchen counter looks like an old lady's bedside table: I have bought those tablet dispensers that have little compartments for each day of the week. Every Sunday I prepare my tablets for seven days. I calculate that it is costing me almost two hundred pounds a month in supplements to keep going. I really do sometimes wonder, if an operation would have been the better choice. But then I tell myself that surgery costs a few thousand pounds, so financially there is probably not much in it. Yes, the NHS might pay for it instead of me, but I don't like looking at things that way. People always say the NHS is free. It's not free, we all pay for it.
My gynecologist finally gives me the sack. She says she is too worried about me and if I refuse to have the operation she proposes, there is nothing she can do for me. She is a surgeon. She operates. I get where she is coming from, but that doesn’t make me feel any less alone. Her monitoring me had given me the strength to plough on. It had been ok to tip my toes into unchartered waters, while I was still safely attached to the lifeboat of school medicine. Now the wilderness is stretching out in front of me with nobody guiding me at all anymore. It's scary.
I still haven’t found the holy grail of healing, but I am as convinced as ever that it exists somewhere. Maybe cutting the rope needed to happen sooner or later for me to find what I’m looking for. Right now, I feel almost paralyzed with fear. I’m not just swimming upstream anymore against the river of my doctor’s, my husband’s and my friends’ (dis)approval, I am facing the big vast ocean of the unknown. Isolated and alone. I will learn later on my journey, that some things you have to do alone and that these are the things that make you grow the most. At this point, I do not yet have this awareness.
I'm tired of being ill. I'm tired of having to justify myself all the time. I'm tired of the excuses endo forces me to make all the time. I am determined to live a normal life for the three weeks a month I do not have my period. I am determined to not let this illness dictate who I am. I am determined to win this fight.
Again, it is my instinct, a voice within me, that tells me not to give up. Every rational thought my brain produces goes totally against this voice. But the voice seems to be linked to my heart and it is so strong, that going against it - however much I sometimes want to - seems impossible. The voice is telling me, that if my body has produced this illness, it can somehow reverse whatever process got me there. The voice is telling me that there is a solution. The voice is telling me not to give up hope.
Medical advances are made all the time. If I can hang in there, who knows. In a few years time, they might find what causes endometriosis and they might just find a remedy.