Aa
Pain
Hi! I just found this forum, and it is amazing to find other women going through what I am. I was diagnosed with endometriosis about 2 years ago, and had a laproscopic surgery. My endo is back and I am going to have to have a full hysterectomy, maybe keeping only my left ovary (even my tubes will be taken). I recently switched insurance carriers and so my surgery wont be covered until November. I live in pain every day and take a pain killer any where from one to four times a day, depending on how bad it is. About every 3 weeks I have a day or two that I take 4 pills and literally cannot get out of bed, or if I do it is to lay in a hot bath tub. This makes me feel so worthless. I am only able to work about 3 days a week, because it just hurts to move so much. Do any of you just ever feel inadequate or worthless? I don't know what all I want to ask, but I guess I want to vent about this to women that understand. Sometimes I feel like people think I just fake this, they do not understand what I really feel like. My husband is so supportive, and that helps, but I sometimes feel like I let him down too. Do any of you have these feelings? Is there a way to help these kinds of feelings?
One more thing, I have noticed over the last few weeks, it is increasingly difficult to hold my bladder. I go from being fine to "I have to go pee right now". It is like if I am not in a bathroom as soon as I feel the need, I am afraid I will wet myself! I have never had this before. Is this something y'all have ever felt? Is is just a symptom or is this something I need to bring up with my doctor?
Hi! Thanks for your response! Sorry it took me so long to write back, I had just found this site that day, and couldn't remember how to get back here!
Yes, an endometriosis specialist did my surgery, and I am still in his care.
Excision was how he did the surgery. He does not like to use lasers because he feels that he has more control with his hands. He also does not use robots to cut either.
Yes, he did talk to me about the possibility of it coming back even with a hysterectomy. The reason we are leaving the left ovary is because I am 28 and he does not want me to go into full menopause so early in life. The right ovary gets ruptured cysts every time I cycle. It is the worst pain ever. I told him I want that removed as well, because honestly, if we are going to do surgery, I want the source of my worst pain gone too! One thing we are "hoping" is that the endo won't come back because of the left ovary. When they did surgery last time, they only found it on my right side. Also, I have never had any pain on my left side. My pain is always on the right. So we are hoping that the endo is really just attached on the right side. He said he will look for all of it and cut out anything he finds. If there is some on the left side, he said he might have to take the left ovary, but he is pretty confident that it will be fine.
I have been on birth control as well. I do still get periods, though. When this all started, I had the Mirena in for 4 1/2 years, and they removed it because I was in pain the last 6 months I had it! I never had a period on that though, and I still had bad pain. The other problem I have, is I had a sister who died of leukemia, and my brother has a blood clotting disorder. I do not have a blood disorder, but with both of my siblings having it, my doctor will not put me on too many hormones that might effect my blood. That seriously worries him.
UGH! It is just all stressful!!!
But, since I wrote my first post, my doctor did put me on Prozac to help with the sadness and depression I have been feeling. It has helped me a million times. That is one relief that I have received!
Yes, an endometriosis specialist did my surgery, and I am still in his care.
Excision was how he did the surgery. He does not like to use lasers because he feels that he has more control with his hands. He also does not use robots to cut either.
Yes, he did talk to me about the possibility of it coming back even with a hysterectomy. The reason we are leaving the left ovary is because I am 28 and he does not want me to go into full menopause so early in life. The right ovary gets ruptured cysts every time I cycle. It is the worst pain ever. I told him I want that removed as well, because honestly, if we are going to do surgery, I want the source of my worst pain gone too! One thing we are "hoping" is that the endo won't come back because of the left ovary. When they did surgery last time, they only found it on my right side. Also, I have never had any pain on my left side. My pain is always on the right. So we are hoping that the endo is really just attached on the right side. He said he will look for all of it and cut out anything he finds. If there is some on the left side, he said he might have to take the left ovary, but he is pretty confident that it will be fine.
I have been on birth control as well. I do still get periods, though. When this all started, I had the Mirena in for 4 1/2 years, and they removed it because I was in pain the last 6 months I had it! I never had a period on that though, and I still had bad pain. The other problem I have, is I had a sister who died of leukemia, and my brother has a blood clotting disorder. I do not have a blood disorder, but with both of my siblings having it, my doctor will not put me on too many hormones that might effect my blood. That seriously worries him.
UGH! It is just all stressful!!!
But, since I wrote my first post, my doctor did put me on Prozac to help with the sadness and depression I have been feeling. It has helped me a million times. That is one relief that I have received!
I know how you feel. I feel so depressed living with endo. I was on BCP for about 3 yrs that was wonderful in terms of not having painful periods but I almost died due to a blood clot that developed in my leg. I had to stop BCP and it was the most difficult and painful decision I had even made. Its been 4 yrs since off BCP. I made a few changes in my diet and it helped a bit. The advice from the volunteer is correct. Hysterectomy is NOT the answer. Pls think twice before such a drastic surgery. It will NOT cure your endo and will cause other unwanted side effects.
I wish you all the best my sister. Warm comforting hugs to you.
I wish you all the best my sister. Warm comforting hugs to you.
Good morning and welcome to the Endometriosis Forum :)
I am a volunteer that helps answer questions regarding Endometriosis. I have had this disease now for 23 yrs and went undiagnosed for 14 of those years so I have researched my face off about this disease and continue to as well as be an advocate to help others.
I want to say I totally understand your frustrations and the pain that you live in and that is why I have to ask you the following questions as most people new to Endo do not know a lot about the disease and take what the surgeon/GP says as the way it should be treated and I can tell you right now 80-90% of doctors and regular Gyno's know nothing about how to treat this disease they just follow what they have been told and there is many misconceptions about this disease.
1) Did an Endometriosis specialist do your surgery?
2) Was excision done or laser?
3) Do you know that having a hysterectomy is not the cure for Endo and that it can and most likely will grow back? Also if they are leaving an ovary for sure it will grow back. Was it your surgeon that suggested this to you?
4) After your surgery did you go on anything to suppress your periods which then helps stop the pain? For example I am on a continuous BCP for the last 7 yrs I get no period just the odd breakthrough bleeding every 3 months.
Please let me know the answers so I can help you further. I really feel that having a hyster at this time is not good but that is just my personal opinion as well as the information I have researched over the last 7 yrs.
You can read my journals about my journey, meds I have taken etc.either way I am here for you if you have any questions or need to vent :)
I am a volunteer that helps answer questions regarding Endometriosis. I have had this disease now for 23 yrs and went undiagnosed for 14 of those years so I have researched my face off about this disease and continue to as well as be an advocate to help others.
I want to say I totally understand your frustrations and the pain that you live in and that is why I have to ask you the following questions as most people new to Endo do not know a lot about the disease and take what the surgeon/GP says as the way it should be treated and I can tell you right now 80-90% of doctors and regular Gyno's know nothing about how to treat this disease they just follow what they have been told and there is many misconceptions about this disease.
1) Did an Endometriosis specialist do your surgery?
2) Was excision done or laser?
3) Do you know that having a hysterectomy is not the cure for Endo and that it can and most likely will grow back? Also if they are leaving an ovary for sure it will grow back. Was it your surgeon that suggested this to you?
4) After your surgery did you go on anything to suppress your periods which then helps stop the pain? For example I am on a continuous BCP for the last 7 yrs I get no period just the odd breakthrough bleeding every 3 months.
Please let me know the answers so I can help you further. I really feel that having a hyster at this time is not good but that is just my personal opinion as well as the information I have researched over the last 7 yrs.
You can read my journals about my journey, meds I have taken etc.either way I am here for you if you have any questions or need to vent :)
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