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endometriosis/anemia misdiagnosed, angry, sad & how do I deal with ...
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endometriosis/anemia misdiagnosed, angry, sad & how do I deal with this?

I started feeling really run down and tired when I was 35 or so. I am now 41. I sleep all the time, have no will or interest to do much of anything and get terrible headaches. I have no friends because I have no will. I was a vibrant healthy young woman that was full of fun and loved life. For the longest time, nobody could figure out what was wrong with me. I was given depression pills. We were trying to get pregnant and nothing was working, so they wanted to do a laparoscopy to figure out what was wrong. At that time we had terrible insurance and I figured we couldn't afford it. My first stupid mistake. That would've taken care of two things a long time ago. I would've found out why I slept all the time and why we couldn't get pregnant. So life continued on and I was always thinking, "What the heck is wrong with me?" I missed so many beautiful days sleeping. Sometimes I never saw the sun. I wondered why my mom has more energy than me. She is always out doing something and I do pretty much nothing but sleep and watch TV. I took clomid twice, a year apart and still couldn't get pregnant.Turns out I had severe anemia because of my very heavy periods. I was never far from a bathroom and there are huge clots. I also have endometriosis. I called the doctor's office many times and the nurse told me that I was just having a heavy period and it was nothing to worry about. When we finally figured out what was wrong, years had gone by with me feeling like crap. I’m angry that I’ve had so many years of misdiagnosis by many different doctors. I feel like I was overlooked and nobody really listened to me. Maybe I should have been more proactive, but I had no idea what was wrong or what to do and I am so tired all the time. Since then I have had 2 D&Cs and 2 laparoscopy to get rid of fibroids and the endometriosis. I have also had 2 blood transfusions. I felt better after these procedures, but it was short lived. I would go right back to hiding in my hole. So, I only have 1 child and he is a senior in high school this year. I am sad, angry, regretful. My husband said that he does not want anymore kids now...it is too late. Then in March, he was diagnosed with a brain tumor. He is fine now, he had a successful surgery and radiation, which meant that the dream of more kids is really over. So, I feel empty and defeated, like I didn't do enough with my life. I am a graphic designer and I have my own business which has suffered severely because of all of this. It is hard to find a job or work for that matter. I can't seem to concentrate for any length of time and I don't really feel mentally alert enough to accomplish anything. I put things off. I have a terrible memory and have trouble thinking of what I am supposed to be doing sometimes. Because I have been self-employed, if I did find a job, it would probably entry level. How embarrassing is that! My wonderful kid is leaving, I have no job to speak of...I'm useless. I want to go back in time and get those years back. I want to still be a mom with more kids. I am a big kid myself and I miss all the games we used to play. I want to play legos again, go sledding and visit the zoo. My son is my buddy and we hang out together. He will be going away soon and I can't imagine not seeing him everyday. My husband says I shouldn't dwell and I just have to get over it and move on, but all I think about is what could have been. I now have to have a hysterectomy. I guess anything would be better than feeling like this. I could've had a career, more kids and a life that wasn't full of regret. Is this all there is? It seems to be all I think about with the surgery coming up so soon. I haven't told anyone all of this and I don't really have anyone to tell.
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Avatar_f_tn
Here I am, feeling sorry for myself when I stumble upon your post. I'm so sorry. There aren't words to explain how sorry I am, no words that will make it better. I have days where I just wanna feel sorry for myself, with endo you need those days. This is gonna sound cliché but try therapy. I started seeing a therapist to come to terms with the dramatic changes I would deal with. At 24, you never dream of being "barren" I was also afraid of all the meds, procedures.im a control freak, letting someone else dictate my care was difficult. It's not an instant fix, but you'll feel better. You'll also get the anger out. Let yourself be mad. Scream, hit things. You have EVERY RIGHT to be angry. Don't apologize to anyone for being angry. Endo is about to become a big part for your life, and your family's life. Be honest, set expectations. Let them know what you're capable of. Ask for help. My husband knows I need help standing when the pain is bad. Or that I can't lift our daughter from the tub on bad days. He knows what I need from him, because I told him. Buy a heating pad, and a body pillow. It will help you get good sleep at night. Talk to a Dr about pain meds, there is no reason to suffer when you don't have to. Don't let hem below you off. Do your research, read everything you can about our disease. I had a hard time getting a Dr to take me seriously due to my age. But I knew my stuff. They couldn't argue after that. Now, this last thing is really important. Be selfish. Not all the time, but don't let people make you feel bad for not going to a party, or baby shower (those are a big slap in the face, you won't get through it without crying, avoid them) take yourself to lunch, get a facial. Buy sexy heels. Endo takes away your feeling of being a woman, so take it back! I hope this helps. You are not alone.
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Avatar_n_tn
I sent you a message.

achilles2

PS I have used both heat and ice and while heat helps while it is being used it also increases inflammation so in the long run it can make the pain worse. I found that ice gives the best long term relief because it fights the inflammation. Also drink Yogi ginger tea (add some honey to help with taste) helps quite a bit because ginger is an anti-inflammatory.
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Avatar_f_tn
Wow, I am so sorry you feel this way. I also feel angry for not taking care of my endo and fybroids sooner, so I could have another baby. Most of the women in my family have it, but they had their chidren at a young age. I myself didn't get diagnosed with mild endo until 2 yrs. ago and have been trying to ttc for almost 5 yrs. now. Even mild endo gives me bad pms, headaches, heavy bleeding and painful periods. Now I think that my endo is to blame for my low immune system, low energy n allergies. My mother died when I was 22 yrs and she was 42 yrs old, but I remember she had hysteroctomy done at 40 or 41 yrs. If she would have been alive I would have known sooner. I am a true believer that God has a path for us and things happen for a reason. You do have a son already and 41 is still young. I am going to turn 44 in April. I'm in my 2nd marriage for 6 yrs n couldn't have children with him. I tried IVF and everything else. I have 2 kids, 17 yrs & 22 yrs, but my dh is sad with no kids of r own sometimes I want to leave him, so he can get someone younger who can give him a family.  Sounds like u have good career also, u will find a good job...have faith! Take charge of ur life :)  When you get healthy ur outlook to life will change. Blessings!    
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Avatar_m_tn
I knew something was wrong with me, I just didn't know what it was or the extent of it. It has effected everything in my life. I wish foresight was 20/20. I'm hoping that after the surgery I won't feel so run down and maybe life will seem better simply because I have more energy. It just really ***** right now and has for a long time. I'm very sad and I haven't had anyone to talk to about it. My iron level is back at a 7 and I have to have another blood transfusion. The headaches are becoming unbearable. There are so many symptoms and nobody put 2 and 2 together. I wish I would've had a clue or worked more to find an answer.
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Avatar_f_tn
I have been suffering from the same kind of feelings, emotionally and physically drained. I'm 21 years old now and a care assistant in a nursin home for mentally I'll patients. That drains me as it is but everyday is the same for me regardless of how much time off I am always exhausted I sleep all the time and have no motivation to do anything I haven't seen alot of my friends in a long time I only ever seem to be dependant and bother about my partner of 2 half years. When I was 16 I suffered from an ectopic pregnancy that ruptured my Fallopian tube causing internal bleeding etc so I have to have it removed immediately. So I only remain with one tube. That was a very difficult time for me. My parter at the time who was couple years older was not supportive in the slightest and friends and family only ever seemed to feel awkward around me when they knows I was upset or tried to talk about it so felt like no one cares. I feel so useless. I feel like my woman hood has been taken away from me. I'm not like most young woman. And I have been different from a very young age. Every since my surgery I have been getting very painful periods, heavy bleeding with clots , really bad pelvic pain that has had me fainting and wakening up screaming in agony ! The pain feels like contractions sometimes and it travels up my bottom and drags down my legs which almost makes them feel paralysed! I get severe headaches and feel very nauseous. I have ended up in hospital 3 separate occasions in the last 10 months with this during my period/heaving bleeding. As far as I am aware I think I am still anemic also since I had to get a blood transfusion after my surgery for ectopic. And my iron levels are usually poor. I have no idea what the hell is wrong with me until I researched and my best pal suggested I get referred to gynaecologist as she thought I may have what she has... Endometreosis. I am convicted I do have it and I know that it is very hard to diagnose. I've tried balancing my hormone levels with contraceptive pill microgynon , pain relief such as ibubrofen, paracetemol, mefenamic acid, naproxen and none of this is reducing my pain... My problem is I obviously want rid of this pain but, I want to be able to conceive!! Not right now but in 2 years time for numerous of reasons I am ready to try for a baby with my partner. Not knowing where I stand with this is killing my , one Fallopian tube and possible endo with a past ectopic preg which has a high percentage of happening again now just puts me down and it's almost as if I've just convinced myself I will never be able to have kids!
I have decided I want laprascopy to diagnose what is causes me these problems and if it's endo it can be treated during the procedure...  I want my periods to not be painful does anyone know how to stop this? Would gettin the coil stop my periods for the time I have it placed until I want it removed ? So I can conceive when I'm ready? Or does the coil risk you for gettin infertile also? Please someone help I'm young but I feel as if my life is coming to end already.
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Avatar_n_tn
I know its hard, but perhaps try and forget the past and look towards the future. Things can only get better from here on if you take on a positive attitude. You will get better soon, *hugs* Lena
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Avatar_f_tn
I know this thread started in January, but I thought I'd post and let Stelbel know I'm pretty much in the same boat. 41, no kids, work from home (ie, can't get a job now, unless it's entry level--and good luck with that), isolated and fewer friends than ever before. It's kind of a crisis I guess, but awfully hard to address it when you can't get your health under control.
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Avatar_f_tn
Are you sure that the anemia and endo are the only causes to feeling this way?  It took years and many tests, but I now know that I have severe sleep apnea, low thyroid, endo, a sensitivity to candida, and something in the family of fibromyalgia, but it's not fibromyalgia. Out of those 5 things, 3 cause me to be super tired and can't think straight, 3 cause pain, and 3 cause depression.  I see symptoms in your post that I experienced for years and they were finally fixed when I got a c-pap machine and started breathing properly in my sleep.  I can't believe how many years I went in that condition.  Prayers for you.
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