Hoping that this is my last (possibly second last) period before my next big operation means 2 things...
1) I feel I definitely could not go through another draining, painful life sucking period
2) I thought I should blog about what it feels like to live with severe endo so I could look back at this in my post-op life and think how lucky I am that I no longer have to go through it every month. (It's wishful thinking I know)
So here goes...my life with endo.
When people think endometriosis means you get bad period pain I sometimes get annoyed. I don't think that explanation anywhere near conveys the pain associated with having a period.I feel it is being passed off as a few cramps in the stomach and maybe a sore back.
For me the real pain of a period is debilitating. I cannot move. I simply cannot stand up and if I do I risk knife stabbing pains in my lower abdomen/ovaries and feeling that there is so much downwards pressure in my lower abdomen/bowel that all my insides could fall out at any minute. Along with the knife stabbing pain is a dull ache that will not go away. To reduce some of these pains I usually have numerous painkilling tablets and lay down in the fetal position without moving for at least an hour until the meds kick in. Even after the meds kick in the nagging aching feeling usually remains and I cannot function as a normal human for the rest of the day. My appetite is effected and I can't drink too much as it will cause extra downwards pressure due to my bladder expanding. Before I started eating a wheat free diet all this pain was compounded by the fact that my stomach was permanently bloated to the max (particularly around the time of my period) which meant that eating or drinking ANYTHING at period time made everything worse. Sometimes I had to force myself to have water just so I could have my tablets.
While that pain lasts 2 days for every period (so really only 2 days out of 30) it happens every month. I originally thought I could deal with this but as the years have progressed I am now at the point where I can not do it any more. It may only be 2 days but think of the ramifications of having that pain for 2 days every month. I have to look ahead on the calendar to see what is going to be effected. Will it be a weekend or a work day? Can I schedule my work day so I can sit down all day or get home quickly if I need to? Am I going to ruin a family holiday or a weekend away by not being human? You can see the how the ripples of suffering start to effect my immediate family.
Endometriosis is a disease suffered by the whole family- not just the individual.
Now that I have suffered from the disease for so long so much of my life has been affected by endo. The pain of endo goes on longer than the first 2 days of my period. I need to make sure I go to the toilet regularly to stop my bladder from expanding too much and causing pain. Almost anything to do with the bowel is painful. Nearly every time I go to the toilet I am reminded of endo in the form of more pain.
Pain during intercourse is also a side effect of endo. Luckily for me it is not every time and it is fine more often than it is not but I still worry about it. Nothing like anxiety to kill a good mood! Again, this effects my wonderful husband and reiterates that endo is a disease suffered by the whole family.
Aside from all that pain I think the thing I hate the most about endo is how controlling it is. It dictates what I can and can't do for 2 whole days every month (and a few times in between). It means that I miss out on participating in family events and basic things like helping my husband with housework. Sometimes I have so much pain that I can't stand up for long enough to get my own breakfast in the morning or to walk to the kitchen to fill my glass with water. I am just so lucky that my husband is so supportive and understanding and does all these things for me when I ask him to but I just hate having to ask. I hate becoming a complete burden on him every month. I hate laying still on the couch while he does all the work. I hate the fact that I would really love to do something productive while laying on the couch but my book is in the next room and I can't get up for 2 minutes just to get it.
I read a fantastic analogy of living with pain on a Facebook page today. When I read it I thought that it applies exactly to my life with endo. The author says that living with an illness is like starting the day with 12 spoons and you have to give 1 of them up for every draining task during the day. every day you need to balance up the activities that you do to ensure you have enough spoons left to deal with everything.
Well as I said- hopefully I will not have to put up with this for much longer. I will have surgery soon to remove as much endo as possible and then continue my wheat free / dairy free diet to make sure it doesn't ever get this bad again. Fingers crossed!
