Very Frustrating

I have been dealing with Endometriosis since I was 14 years old. Had a complete Hysto when I was 31. Now I am 38years old and have been dealing with Ovarian Remnant Syndrome since then. I have had 4 surgeries since the Ovarian Remnant Syndrome has been present and each time they get some but it keeps coming back. I am really frustrated because before this ORS, I had 7 surgeries because of Endometriosis and chocolate cysts. I had a baby thank God through all of my suffering. I thought my suffering would have stopped, then I had a complete hysto and I thought my suffering would stop, Now I have Ovarian Remnant Syndrome, so I guess I am wondering when will the pain and suffering stop????? I am really depressed, I try to keep myself together for my husband and 7 year old son but it is hard. I have chronic pelvic pain, Endometriosis and now Ovarian Remnant Syndrome. I want to find a group of ladies that understand how I feel, because I feel alone and have felt alone for along time. I normally don't put myself out there but I am so tired of feeling alone with my diseases. Reach out if you feel like I feel and need a friend because I really do right now.
LadyD25 LadyD25
36-40, F
17 Responses Sep 17, 2012

Hi Lady D25,
The GP basically said that I am a trooper and that I would know if it is back or not. He didn't even examine me...he said that it is more than likely another remnant back and that as long as I am on Estrogen it will trigger it. Of course he said I am too young to be in Menopause. So he referred me back to the endometriosis specialist and he gave me a form to get an ultrasound. I don't want to miss work so I booked the ultrasound June when I have time on a day off. I will have to wait to hear from the specialist for my appt...I'll probably call them myself next week...
He said try to look at it like an inconvenience, at least it isn't cancer.... So that was about it, just as I expected from him. I will know more once I have my appointment with the Endo Specialist. Also once I have to ultrasound....It is just a waiting game now! Anyways, thank you for listening Endo Friend! My pain is very mild right now, more of a discomfort/pressure...I took an advil this evening to avoid muscle tension...I think partly due to stress I feel achy. Anyways, lets keep in touch! Talk soon!
From your Endo Buddy

Hi Endo Buddy,
I can't believe your doctor was so in considerate in my opinion. We get it is not cancer BUT it still hurts and trys to dictate how we run our lives.... I am glad you get to go back to the Endo Specialist at least maybe they can help you more. I do know that Estrogen does feed the Endo but come on....Doctors get on my nerves sometimes. We know our bodies better then anybody. You hang in there sister!!!! I am going to change my eatting habits to the Endo Gluten Free Diet to see if that helps with the pain at all. My Endo friend that I was helping after surgery is on it and we did the Endo Diet for the 3 days I was with her and I noticed that my pain was not as bad as normal. Don't get me wrong, I still had pain but not as bad as I normally would. I will do whatever to help with the pain at this rate. You take care of yourself and keep me up to date on how you feel! Well, take care and we will talk soon!
Your Endo Friend!!!!

Btw-I live in Canada, forgot to mention that the last time

I am so glad you are at the Dr. I am curious what they will find. I hope it is just scar tissue. I will cross my fingers for you!!! How is your pain today? I am feeling a little bit better and resting. I will be waiting to hear from you my Endo Buddy :)

I'm at the dr office right now (gp only) gonna ask for an ultrasound slip. C what he says, but he's not really going to have any answers... Just a quicker way to get into my specialist office... Hopefully I can get in soon for an ultrasound... I'll keep u posted! Thx for being my endo buddy! :) sorry to hear of your suffering, u are very strong...

Hi Endo Friend,
Survived the convention but not without pain. No one noticed but I was wishing I had some Advil handy. I managed to get through. The pain has seemed to have gotten more intense and it feels almost like it is hot. It is totally in the ovarian area. My bowels seem to be sensitive as well and I feel like I am kind of bloated and full even when I am not. Just kind of achy all over may abdomen and lower back especially on the right side. I know it is something not good. This has been persisitent for too long now. I am so wondering if it is another remnant or adhesion. My guess is both :( Not good news but I am trying to be realistic. I never really totally put my guard down after my last surgery but of course stayed positive and optimistic.
I have been totally living a full life these last 6 months since I recovered from the first ors and don't want this to get me down. I hope that I can deal with this so that it doesn't effect my job. I really love my job and the people I work with. My family will love me and put up with this no matter what but my job is so perfect for me and I don't want to give it up or lose it.
Thank you for sharing your personal information and story, it means a lot and makes me understand things a bit better. It also makes me feel not so alone. It gives me someone I can go to when I am feeling like I need to get it off my chest.
I go Tuesday morning to see the Dr. and then will have to wait for an ultrasound. I remember my surgeon saying that if he thinks he didn't gett it all following the surgery he would give me progesterone along with the estrogen (Hrt). After the surgery he felt that he absolutley got it all so I don't need the progesterone. I am thinking that since it is so soon after the surgery I would rather try the progesterone first before I jump into surgery (if it is an ovarian remnant again). I can' t imagine having another surgery so soon. Seems too soon to do that to my body again....I don't want it to spread all over though... such a stubborn, stubborn disease.

Hello my Endo Sister,
I am so glad you got through the conference! Don't you hate it that we always have to hide our pain and be strong!!! You have to tell me how your Dr. Appt goes. I know it is hard trying to figure out what is causing the pain and if surgery is in the near future. But trust your gut, I know mine doesn't lie...lol. I know that some doctors try there best to get rid of everything, but this disease is such a witch with a B!!! I hope that they can give you the progesterone along with the estrogen and it goes away! I will have my fingers crossed and send a prayer out to you! I am glad we can vent to each other! I don't feel so alone either. Thanks for being my friend. I hope you have a great week! Please Please let me know what the doctor says. I just want to make sure you will be ok.
I know it is tough going through this and hiding it all the time, but I thank you for sharing it with me so we can be a comfort to each other.
I survived camping this weekend with my son but OMG I hurt. I was on meds the whole time just trying to get through it. I swear I feel like I am 38 going on 83 instead of 39....crazy...
I will talk to you soon!

Oh...please google : Dr. Leyland - Endometriosis - Dienogest
(he was my last surgeon & was in Dubai at a conference and announced this new drug!)

Hey Friend,

I don't mind all the questions...lol! I am not on HRT. They give me a shot of B12 and Testasterone and progesterone. My body produces way to much estrogen, even after the complete hysto. It seems like every surgery they remove more and more of the ovarian tissue. My doctor explained it like the tissue gets wraped in the scar tissue and it is really hard to tell them apart. I believe I have nerve damage. I am on Lyrica and it helps a little bit but, there are some days I have to take the strong meds cause the pain is so bad. I feel like my muscles contract in my stomach, almost like contractions. It seems like when it gets cold outside my pain gets really bad. If I do to much my stomach will hurt. I can't sit to long or stand to long so it is bad. I filed for disability because the doctor said it is not going to get better. The adhesions are really hard to deal with at times, along with the Endo pain. My Endo has moved to my bowel and bladder along with the scar tissue.

I have never heard of Dienogest, but I am sure going to look it up and tell my doctor about it.

Do you live in the US or Canada area?

Hope to hear from you soon Endo Sister!!!

By the way....Did you hear of the brand new drug that has been released for endometriosis? It is called Dienogest. (google it to see!) It just was released in April. Be sure to mention it to your Dr. I know I am going to! It is suppose to take away pain drastically. It has no ill side effects and is not a pain killer!
Fightlikeawoman

Hi Lady D25-
Hope you have been well, how is the support group doing? I hope that your kidney issue turned out to be nothing.

It has been a while since we have been in touch.... I have been functioning very well and enjoying life. Although his past week I have been having deep pelvic aching and I am fearing the worst. I keep telling myself it is adhesions and I pulled at Yoga.

My mind of course fears that it is a remnant coming back to haunt me. I decided for peace of mind I am going to go get an ultrasound. I hope so badly they don't find ovarian tissue.
I have been seeing a physiotherapist regularly to help me with aches and pains I get in my shoulder, I blame it on my occupation. (Dental Assistant). I am calling my GP to set up an ultrasound on Monday. They do ultrasound waves on my abdomen to help with adhesions.

How is your son doing? I hope you are doing well. I often think of you and am glad we have this abliltiy to communicate...it had been so long I had to re-log in and reset in order to Post this message! Take care...

Hey Fightlikeawoman,
I am so glad you reached out to me! I forgot all about this site. My support group is going well. I am meeting alot of new girls. We are staying in touch by phone, email and facebook, whichever they find comfortable. It is nice to call someone when you just need to talk. I am so glad that I joined. We just met a girl that came from Utah and she is Omish. Her parents and her were very sweet. The girl went through hell just to get here. She had Endo all over the place and she still is in a lot of pain, but recovering well. She was so happy that all of us girls came to visit her. Nothing warmed my heart more than to visit the Omish Girl. She said where she is from she is all alone and it just broke my heart. We are going to write to each other when she goes back home.
My kidney is ok but I had another surgery about 6 weeks ago. I had tons of adhesions that they removed. My pain is still there but not as bad. I just have to deal with the Chronic Pelvic Pain that I am in all the time. So I started to go to Massage Therapy and it is helping a little bit. I am hoping this helps so there is no more surgeries in my future but who knows. I will just take it one day at a time. I am on disability right now. I am able to rest when I need to.

My son is doing well. Getting big. His birthday is in a couple of weeks, so we are getting ready for his party.

Please let me know when you go to the doctor and when they say. I hope everything goes well but if it is back I am here for you! It could be scare tissue and that really does hurt. I know, I just got done going through that! I hate that we suffer the way we do but I am sure it makes us a stronger person in the end! Now I just want to help as many women that I can. I know how it feels to go through this and sometimes we just need a friend that understands and can help us through, ya know? Well enough about that.

How is your family? I hope you stay strong! I am always here for you if you need me. I have no problem giving you my personal info if you want it. Well talk to you soon! Take care my Endo Sister!!!

Hi Lady D25,
So nice to hear back to quickly! I am sorry to hear that you had to have another surgery, how are you feeling & how did the surgery go? Was it just adhesion removal surgery or did they find more endo as well?(when I use the word "just" I am not trying to minimize adhesion surgery, just wondering if they only found adhesions or not ;)). I hope that the endo was gone for you... I am having a feeling that what I have is adhesions...I think it makes sense since my last surgery was 7 months ago. Apparently adhesions can start to exhibit pain about 6 months following a surgery, so time wise this would make sense. Either way it isn't good news but the thought of having to go through ovarian remnant surgery scares me a lot as well as having to go off my hrt scares me too. Anyways, I had a rough week thinking and stressing over it. I have exhausted myself. Thank you for your reply, it helped me out and gave me much hope that this is not a remnant that it is probably adhesions. I have an appt. next week to see my GP so that he can send me for an ultrasound. I'm keeping my fingers and toes crossed to say the least. In the meantime I am taking tylenol or advil for the discomfort. I havn't told anyone because I don't want to worry or upset anybody around me. I have been doing so well it has been nice getting to lead a "normal" life without anyone feeling sorry for me or having to worry about me.
I know that people like us are super strong, emotionally and physically. It blows my mind when I see "healthy" people getting upset over silly little things when they have no idea what it is like to walk around with a chronic issue. Like you said, it only makes us stronger!
My family is well, everyone is having a good year at school and is happy so this is a blessing! Have fun planning your son's Birthday! These are things that keep us going and gives us a purpose to stay strong!
I am off to a convention this weekend overnight and hoping my symptoms subside enough to enjoy myself and also so my coworkers and employer doesn't notice anything happening to me! I don't want to start missing work again....that makes things even more stressful...as you know...
I am glad that you are able to be on disability so you don't have to worry about the added pressure of work. I am sure you wish you could have the choice to work though. Anways, thank you for listening. We share such similar circumstances, there isn't anyone else that I know of that knows exactly what is going on physically with me!
That is so amazing that you are visiting with other people to give support after surgeries! That brought tears to my eyes. I can't even imagine what that would of mean to that woman. Wow, that is really inspirational. There is a support group not to far from my area. I am considering joining it, I am sure that I could get some support as well as share my story and give my support. A lot of endometriosis patients end up adopting and I am sure that I could help in that department as well. Thanks for helping and inspiring me! :) Talk again soon!

Hey Friend,

When they did my surgery they found a lot of adhesions and some Endometriosis. The adhesions hurt really bad and seem to come back faster than expected. My last surgery my bowel was stuck to my pelvic wall so they had to really do some work. That left side has caused me problems all my life. I am still hurting since the surgery. The dr. said to try and deal with the chronic pain by acupunture. I started seeing this Massage Therapist and she has helped me alot. I am going to an acupunturist this month. I will let you know how it works out.

I wish you lived close to us. There are 2 girls in our group that are trying to have children. It would be so nice to talk to someone who has adopted children. Maybe you could give us some advice and I could pass it on to them?

I hope you do well at your convention. I pray your pain stays under control. Let me know how you do!

Thanks for listening and inspiring me too! I look forward to always hearing from you. Talk to you soon!

Hi Friend,
That is crazy that they continue to find endometriosis. I may of asked this before but are you on HRT? Did they find an ovarian remnant or random endometriosis?
I have a feeling that my Dr. really worked hard last surgery as well and that is why I am feeling adhesions quickly too. They removed the ovarian remnant that was adhered to my pelvic side wall. There was also chocolate cysts on my bowel and bladder.
I am happy to share advice, I am sure though that the system in the U.S. is much different than in Canada. I have adopted internationally as well as domestically.
I feel much better today for some reason, the pain is still there but less intense. I hope that it continues to subside. Do you have constantly or does it come and go with intensity? Did you get any relief after your last surgery? Do you think there is nerve damage at all from the surgery? Sorry for all the questions! Thanks for listening...
From Endo Buddy

1 More Response

Hi there,
Just checking to see if I can still post! Hope you are well!
Fightlikeawoman

Hi Fightlikeawoman,

I am glad to hear from you! Sorry it took so long to respond back. I have been going back and forth to the doctors office. You were telling me about your doctor and how he is the best in Northern America and he travels, it sounds like my doctor. His name is Dr. Nezhat. What is your doctors name? Wouldn't that be something if we were going to the same doctor! :)

I went to the Support Group that I was telling you about and I learned sooo much! I was so happy I went. There is going to be another one in January. I like them spread out like that because I have to travel to go to them. It is worth it because I travel for my doctor so my husband and I are use to it. My mom helps us with my son, so I dont have to drag him along...lol. I learned alot, I am going to research it and if it is useful, I will pass it on to you! It took me along time to make my mind up to go to a Support Group, I think now, I am ready to listen and share my story.

I thank you for reaching out to me! I feel like I am all alone sometimes. I look forward to your emails to see how you are doing. Just wanted to say thanks!!!!

I am watching the news are this Superstorm Sandy and my heart goes out to all of the victims going through that! I hope you do not live in those area's. I think it is so sad!

Well, I just wanted to drop you a little note saying hi and catching up with you! I hope to hear from you soon! I hope you are doing well also!

Take care of you and I will talk to you soon!
Your Endo Buddy

Hi LadyD25,

I am glad that you are going to attend an Endo Support Group. I was planning on attending one & then I realized that I wanted & needed a break from immersing myself with the endometriosis topic in general. During my presurgery & recovery time I was feeling so overwhelmed about it that I was forgetting about the joys in my life. I will probably join it in due time but for now I am being gentle to myself & am just trying to get back into regular routine. I am so happy to be feeling good today & know I can' t predict the future so I will take each day one day at a time & enjoy myself when I am most able.

I am so sorry to hear that they think they have found something on your kidney. Is this the first time that they have seen something on your kidney? Do you go for regular ultrasounds to monitor things? What sorts of meds & hormones are you taking?

I was considering going to a counsellor but then as the healing progressed & I felt better physically, I started to feel much better & more optimistic emotionally. I have 1 birth daughter & also adopted 2 children. One is adopted locally & the other internationally. Last year my youngest adopted daughter was diagnosed with Autism & my adopted son is suspected to have FAE. I truly have to take my life one day at a time since I have so much on my plate. Raising special needs kids is so stressful & time consuming. It is constantly a balancing act to take care of all of my childrens needs & also to take time for my own needs. No wonder I have moments of feeling overwhelmed. Thank God for my husband. He has been so supportive through all of it & also an amazing dad. It is a good thing I chose the right guy! My children see counsellors for their adoption issues & special needs so at least I have family counsellors there at my finger tips when/if I am ready to talk to someone.

I have had 3 surgeries in the last 3.5 years (5 other surgeries since 2000)...luckily I had taken 5 years off to be with my kids during two of the surgeries. I have been back to my work for about a year & a half & it is a nice distraction & change from being at home. I feel blessed that I am well enough to be able to keep a job. A few years ago I was in so much pain I wouldn't of been able to do it. It was truly a struggle to get up in the morning to get my kids breakfast on some days. I look back & don't know how I did it. I just pushed through the pain I guess. There were some days I was certain I had chronic fatigue syndrome. I was soooo tired. I don't have that exhaustion anymore thank goodness.

The Dr. told me to have a good life, he said he knows that he got it all out. I have no choice but to believe him. In the back of my mind I have my guard up & think it totally can return. For now though I need to hold on to the hope that it won't but I am not naive at the same time. Apparently my Dr. is one of the best in North America & he travels the world teaching his skills on how to treat severe, complicated cases to others. So I am hopeful for sure. I plan on sending him a huge thank you.(This was the first time I had surgery by him) Prior to that I was seeing a regular OBGYN I could barely thank the specialist properly when I went to my post op. I was so relieved to know that he was super confident that he removed everything - cysts, ovarian remnant, adhesions & any new endometriosis growths. I am to stay on my hormone therapy until I am 60 & he said he will never see me again. I cried all the way out of the hospital & all the way home...just felt so relieved to hear him say that...

My incision sites are hard lumps now & healing well. I feel pain free & decided to go to a physiotherapist for some help with adhesion prevention & also for some accupuncture. I hear that it can be very helpful. She also does ultrasound waves on the incision site to increase circulation to help slow down or diminish scar tissue adhesions. I figured it is worth a try. So far so good.....

I am so glad that you have a fight within you. It is awesome that you can focus on the family you have to keep you going. That is what keeps me going too. Everyday that I can do something for my kids & be enjoying them fully is a blessing. I don't take them for granted that is for sure. I have worked so very hard to be healthy, get pregnant, adopt & stay sane. I can't take a single moment for granted even though sometimes I am jealous of those who do!! In general though I know that this disease made me who I am today & I know how very strong I am. I am very proud of myself & other endometriosis sufferers like yourself who don't ever give up.

Please keep in touch & know I am here listening even though sometimes I am too short on time/busy to properly respond quickly. Let me know how you are doing & also how the support group is! Thank you for listening & for being my Endo Buddy.

Hi LadyD25,

I am glad that you are going to attend an Endo Support Group. I was planning on attending one & then I realized that I wanted & needed a break from immersing myself with the endometriosis topic in general. During my presurgery & recovery time I was feeling so overwhelmed about it that I was forgetting about the joys in my life. I will probably join it in due time but for now I am being gentle to myself & am just trying to get back into regular routine. I am so happy to be feeling good today & know I can' t predict the future so I will take each day one day at a time & enjoy myself when I am most able.

I am so sorry to hear that they think they have found something on your kidney. Is this the first time that they have seen something on your kidney? Do you go for regular ultrasounds to monitor things? What sorts of meds & hormones are you taking?

I was considering going to a counsellor but then as the healing progressed & I felt better physically, I started to feel much better & more optimistic emotionally. I have 1 birth daughter & also adopted 2 children. One is adopted locally & the other internationally. Last year my youngest adopted daughter was diagnosed with Autism & my adopted son is suspected to have FAE. I truly have to take my life one day at a time since I have so much on my plate. Raising special needs kids is so stressful & time consuming. It is constantly a balancing act to take care of all of my childrens needs & also to take time for my own needs. No wonder I have moments of feeling overwhelmed. Thank God for my husband. He has been so supportive through all of it & also an amazing dad. It is a good thing I chose the right guy! My children see counsellors for their adoption issues & special needs so at least I have family counsellors there at my finger tips when/if I am ready to talk to someone.

I have had 3 surgeries in the last 3.5 years (5 other surgeries since 2000)...luckily I had taken 5 years off to be with my kids during two of the surgeries. I have been back to my work for about a year & a half & it is a nice distraction & change from being at home. I feel blessed that I am well enough to be able to keep a job. A few years ago I was in so much pain I wouldn't of been able to do it. It was truly a struggle to get up in the morning to get my kids breakfast on some days. I look back & don't know how I did it. I just pushed through the pain I guess. There were some days I was certain I had chronic fatigue syndrome. I was soooo tired. I don't have that exhaustion anymore thank goodness.

The Dr. told me to have a good life, he said he knows that he got it all out. I have no choice but to believe him. In the back of my mind I have my guard up & think it totally can return. For now though I need to hold on to the hope that it won't but I am not naive at the same time. Apparently my Dr. is one of the best in North America & he travels the world teaching his skills on how to treat severe, complicated cases to others. So I am hopeful for sure. I plan on sending him a huge thank you.(This was the first time I had surgery by him) Prior to that I was seeing a regular OBGYN I could barely thank the specialist properly when I went to my post op. I was so relieved to know that he was super confident that he removed everything - cysts, ovarian remnant, adhesions & any new endometriosis growths. I am to stay on my hormone therapy until I am 60 & he said he will never see me again. I cried all the way out of the hospital & all the way home...just felt so relieved to hear him say that...

My incision sites are hard lumps now & healing well. I feel pain free & decided to go to a physiotherapist for some help with adhesion prevention & also for some accupuncture. I hear that it can be very helpful. She also does ultrasound waves on the incision site to increase circulation to help slow down or diminish scar tissue adhesions. I figured it is worth a try. So far so good.....

I am so glad that you have a fight within you. It is awesome that you can focus on the family you have to keep you going. That is what keeps me going too. Everyday that I can do something for my kids & be enjoying them fully is a blessing. I don't take them for granted that is for sure. I have worked so very hard to be healthy, get pregnant, adopt & stay sane. I can't take a single moment for granted even though sometimes I am jealous of those who do!! In general though I know that this disease made me who I am today & I know how very strong I am. I am very proud of myself & other endometriosis sufferers like yourself who don't ever give up.

Please keep in touch & know I am here listening even though sometimes I am too short on time/busy to properly respond quickly. Let me know how you are doing & also how the support group is! Thank you for listening & for being my Endo Buddy.

Hi Fightlikeawoman, It was nice to hear from you! I wish you all the luck getting back into the routine of kids and work. I will always be here if and when you need to chat. I am going through some medical issues AGAIN, maybe looking at another surgery but whatever happens, I will be ready. They found a cyst on my kidney and they are trying to see if the Endo is moving there. I am praying that it is nothing. Enough about that. I hope you are recovering well. I am going to an Endo Support Group, I am really looking forward to that. I will let you know how it turns out. Well I will talk to you soon! I hope you have a great week and I am glad to hear from you. Stay well Endo Sister!

Hi Lady D25 - I am so sorry that I haven't kept in touch. Have been overwhelmed with getting back into my daily routine with my kids & work. My husband was away as well & luckily my parents were here to help me out. I hope you are doing ok & I do plan on keeping in contact with you. I will reply again very soon. Just wanted to touch base with you quick before the weekend ended & the work week starts again. Looking forward to future chats. :)

Hi Fightlikeawoman, I am glad you liked your gift. I am trying to get use to this website. I am so use to Twitter and Facebook that I was having a little difficulty.

I do understand your anxiety about the whole thing. I thought all my surgeries were finally too but unfortunitely the Endo has a mind of its own. I have not given up hope but I definately don't think that this will be my last surgery either. Not to be a negitive but I don't get so devasted when it does come back. My husband tells me that it is my cross to bear and to just take it one day at a time. My doctor finally took me off of work because I have been missing so much and now that the Endo might me moving to my Sciatic Nerve and down my leg. I love to work but I guess I need to listen to my body. After all the surgeries and all the treatments I guess they figured it was good to take me off. My husband has been pushing me for awhile to stop working because it hurt him to see me suck it up to go to work and then come home and go to bed in so much pain. So he talked to my doctor and now I am off work. Not sure how I like it, but I give myself chores to do everyday and I get to do homework with my son everynight. I have to say, it is alot better on my body. I never thought I would be on permnant disability by the time I was 38 yrs. old but I guess that is how it goes. I pray they got it all! I have learned over the years that Endo is a very tricky disease and you have to learn as much as you can about it and be your own avocate about it. All of your anxiety and overwhelming feelings is very normal. It is ok to have your guards up. But I will tell you, you healing from this surgery is the most important thing you need to focus on now. This is how I talk to myself to help me, I have to get through this day so I can be ready for the next day. Whatever is your drive to get up in the morning, should be your drive to heal up through this surgery. For me, it is my son and husband. I fought hard to get my son and I refuse to stop fighting.... Everyone is different. Honestly, between us, I would not know where I would be if I did not have that little guy. He gets me through some tough times. Don't get me wrong, my husband is a rockstar and he is my biggest cheerleader in my corner.... Just find your focus on what causes you to fight hard. It helps me anyway. And everyone is different and that is ok. It is ok to feel how you are feeling. I promise it is normal, well it is our normal, may not be everyone elses normal but it is ours....especially with Endo. Endo can wreck your marrage and your life if you let it.
I just went to see a counslor yesterday and I left feeling worse. She said I was depressed and I have every right to be but that I needed to see a psyciatries to prescribe me meds. She said it would make our counseling sections easier because I had to many walls up....ya think!!!!! This is what I told my husband, I want to talk to somebody that has gone through, or understand how Endo works!!!! So I have decided to call my primary care doctor or my specialist and get some meds to help me cope.
I do believe that God put us in each others life for a reason, cause I really needed a friend to talk to that understood how I felt. I have a wonderful support system but like you, I feel like the "debbie downer" and I feel like I am a burden. My best friend and I got into a fight because she was trying to tell me when the pain comes on to block it out and go to a place that I like. I said REALLY, imagine having a knife stabbing you in your side over and over again, now try and go to your happy place.....I was pissed. I know it is not her fault she was just trying to help, but I have shut down again. I prayed to just get me through and then I wrote that story and I heard from you. You have no idea how much you are helping me right now! I like talking to someone that knows exactly how I feel and can even relate to it!
YOU are just as strong as I am! Maybe in friendship we can be stronger.
Thank you for reaching out to me! I appreciate your friendship.
I am here for you if you need to vent. Sorry if I don't spell right or repeat myself. My meds are pretty strong right now to help with the pain.
I hope to talk to you real soon! Take care of yourself and contact me anytime.

Hi LadyD25
So nice to hear back from you & thank you for the gift! I totally agree with you when it comes to the "looks of just get over it". In general my family is very supportive & sympathetic but at times I feel like I am a "debbie downer" or a burden. In general I am very active & productive when the endo. isn't knocking me down. I have a birth daughter & two adopted children. So, when I am "down" with the endometriosis I need a lot of support to keep the household together. I always feel guilty when I miss work as well. The endo. keeps me from being the person I have always dreamt of being. It interferes with me being the mother, wife & employee I would love to be. I am sure you can relate!

I am glad that you have a specialist. It is good to feel that you are getting the best possible care when you are in this chronic state. This latest surgery I had was done by an Endometriosis Specialist. Prior to him I was seeing just a regular gynecologist so I am having to put my faith in this current surgeon. I am skeptical after everything I have been through that" this is it". So I have my guard up. It is just too hard to believe that he did get everything out. He seems convinced that "Everything is gone & that I can get on with my life & this will be my last endo surgery". I hang on to that hope but I still carry anxiety with me with the dreaded thought of "what if this doesn't work"? I have never struggled with depression or anxiety but I definitely lately am starting to feel overwhelmed & at times my thoughts take my breath away & I feel panicked. I know that I need to relax & let myself heal from the latest surgery & keep hope within me; but at certain moments it is easier said than done.

I can't imagine going through more surgeries to remove an ovary that has already been "removed 2X". You must be an amazingly strong person to have gone through all the ovarian remnant surgeries...especially after all the surgeries you have already previously endured. Not only is it extremely tough physically but emotionally it takes a huge toll. The fear of the future is difficult & also not having any control over it is scary for sure. Please know I am here to listen - anytime you need to vent or talk. It does make things easier knowing we are not alone. It is also nice to chat with someone outside of our current friends & family. Sometimes I feel bad talking to my family & friends about it - I feel like I am constantly unloading my problems onto them. It is hard on them as well & I don't want them to look at me like I am depressing to be around. I was considering getting a little bit of counselling just to get stuff off my chest & then I found your email. Thank you for replying it means a lot & helps a lot.

Hi Fightlikeawoman, Thank you for reaching out to me. It gets lonely feeling like you are the only one with these issues. I do have family support but no one that really knows how I feel. I feel like sometimes they look at me like, just get over it.
I do have a Specialist that I see and he is one of the best in the Northern California area. (My personal opinion) My husband found him about 15 years ago through the Endometriosis Assoication.
I am so glad you had a child through the battle with Endo. Sometimes I feel like having my son keeps me fighting and not giving into this Disease. Enough about me, lets talk about you...lol How did your surgery go? Did they get everything they needed to or could find? When you feel up to it, let me know. If you want too!
Thank you again for reaching out to me! It helped me to know that I am not alone. It is crazy how are stories are really simular. Well, you rest and get better. I hope to talk to you soon! Stay strong and encouraged!

Hi Lady D25, I think I was meant to respond to you since I had my surgery for Ovarian Remnant Syndrome on Sept. 17 (this Monday)- the day you posted your message. I am 36 years old & share a very similar story as you, so we are not alone. I have suffered from Endometriosis since I was a teenager & I was blessed to have given birth to a daughter. I have endured a miscarriage, 1 laporotomy, 6 laproscopic surgeries, a full hysterectomy in 2010 & was diagnosed this summer with the ovarian remnant. I know how it feels to be devastated after having thought a hysterectomy would cure the endometriosis. It is hard to put into words how saddened & scary it really is & how alone it makes us feel. Please don't hesitate to post to me when you need to. Have you managed to find any surgeon who specializes in Endometriosis?