I had a follow up with my doctor yesterday and I am very disappointed in her. I told her about my lack of motivation, energy and depression along with my worries of how I will cope with this disease when it comes time to work full time. She said that lots of women are dealing with this disease and manage pain control and all that and work full time. She is right but I felt like she told me to basically deal with it.
She is keeping me on the Visanne for another 2 months despite my crying spells.
She offered me no solutions in terms of dietary or pain relief other then Advil which I would be taking every day and I dont want to do that. I cant get used to the only medication that works for my headaches. I use heat on my lower back but I cant very well do that in a workplace setting.
I felt so let down and dismissed. I know she cares about her patients but there was such a lack of compassion for what I feel that I am thinking about looking into some other specialist who deals with the symptoms of Endo so that I may be able to overcome the lack of energy and get my ass out of this rut.
I realise now that it comes down to being my own advocate. I knew that before but it's a definite now.
Post by immrsmoore on Jan 24, 2013 16:03:37 GMT -5
I'm so sorry to hear about your situation with your doctor. I don't know if you will find this helpful or not, but I take quite a few supplements to help with the endo. Probiotics help with any gastrointestinal I have. Serrapeptase (a digestive enzyme) is supposed to help get rid of dead blood cells and scar tissue. I haven't been on this one long enough to see if it's working yet. I also recently started taking an estrogen blocker (since endo feeds off estrogen). Again haven't been on this long enough to tell if it's working yet. They're all worth looking into though. And as far as diet, for me, a low carb (Primal) diet has REALLY helped. It helps with my gastro and hypoglycemic issues. I hope you find some relief. Don't give up yet :-)
I'm sorry to hear you felt letdown and unheard. I actually had a doctor once tell me that if I didn't go on birth control or Lupron, I just had to learn to deal with the pain. No lie. She was that blunt. I didn't go back, and am happy to say I TOTALLY proved her wrong.
I'd encourage you to both find a different doctor and also do some research on your own, see what options you're most interested in trying. Endo is tricky - there's no magic bullet. There's the endo itself, the hormonal imbalance, the auto-immune aspect, the damage to other organs (potentially), the adhesions, the emotional stuff, and the changes in your body alignment as the areas tense up to deal with it all! That's why so many of us look into other options beyond just drugs and surgery, because those don't touch all the facets of this disease and many of us are/were disappointed with the results of those two options. Despite what some doctors will tell us, there are things we can do to at least get partial control of what's going on - either alone or in conjunction with traditional treatment - and I promise, that can do wonders for the emotional side of things once you find ways to take the edge off yourself.
I guess what I'm saying is that, yes, you'll have to be your own advocate. But it's a really good investment in yourself to go through the effort. If you want a really good, thorough and unbiased look at all your possibilities, take a look at the endo book in my signature. I found it really eye opening - both traditional and non traditional treatments are covered all in one place. It really gave me hope and was empowering. Might be a good place to dive in!
Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg & The Endometriosis Association is my go-to book for information & treatment options. ******************************** Taking Charge of Your Fertility by Toni Wexler is my go-to book for understanding the menstrual cycle, hormones, and fertility indicators.
It was such a downer that I have literally been down for 2 days. It took me a while to tell my husband that I felt the way I did but he was supportive.
I have managed to minimize my sugar intake and I have been thinking about the endo diet but financially, it's a hard call to make so I am trying to compensate by eating better and stuff.. It is FREEZING up here in Ottawa so getting out for walks is IMPOSSIBLE. I have been thinking about yoga for fitness and piece of mind so it is definitely something I would consider.
What I honestly find hard is the fact that this must be what is causing the infertility. It is a hard pill for me to swallow. Once I am off the meds, it should help but it isnt helping my emotional state at the moment.
I have been thinking about asking for another doctor but at the same time, I am thinking I will just keep trying to eat well and deal with things on my own until I have my next follow up appointment. I figure if nothing happens in terms of getting pregnant once I am off the meds, I will be sent to the fertility clinic anyways. I would HOPE that they would be better equipped in dealing with Endo mixed with infertility.
So far, I have noticed that there are some changes in my body that have been good in the last few days with me being on Visanne. The first being mild spotting and no cramps. The downside is, I still have back pain- today being one of those days.
As time has passed since my appointment, I realize that unless I speak up for myself, no one will get what is happening to me. I am also at the point where I try to not discuss it unless describing what it is. It's a part of me now.
Post by MustangGtGirl on Jan 31, 2013 19:19:31 GMT -5
I am one who can totally understand having issues with your Dr after surgery. If you read my thread I thought I was alone you will find some great advise on there that the girls gave me. We always have to be strong and speak up for ourselves. I am not one to speak up so I write letters to my Dr's and give it to them if I cant get the words out of my mouth. It does work.
I'm sorry this has been so rough. Don't give up, fight for better. Can you talk to your primary doc on some of these concerns? I hear you on the fertility side of things, it is a frustrating side effect of an already crappy disease. But there is hope, many women with endo do go on to have children after figuring out the right treatment. Hugs, girl.
I went to see my family doc because of the depression issue. We are trying to increase the antidepressants in hopes that it will counter the hormonal depression. I have 2 months left on Visanne! I can do this. (I think).
I have had a change in routine so that hit me hard this week. I have dealt with exhaustion and insomnia, flare ups that had me almost in tears. I have follow ups with dr's in March so who knows what that will bring.
Thanks ladies. I am glad that I am not the only one who feels like sometimes we have to scream at the top of my lungs to be heard.