I had Laparoscopic surgery a week ago and they cauterized Endometriosis on the left and right side. I was in a ton of pain before the surgery in the groin, lower abdominal, back, and chronic fatigue. I realize after surgery I should still have some pain from the cauterizing and digging in my tissues but i thought the pain would be less then what i had before surgery. I just went back to work at my desk job after staying home for 6 days. I now have a stabbing pain in my right groin area that radiates between my right lower abdominal side area and the lower groin on my right side. The pain comes and goes all day. I am so uncomfortable that I can't even sit in my desk chair at work. Standing seems to help but when I get that sharp pain I keel over. Today the left side of my lower back started to hurt again like before surgery. Has anyone had a similar experience? Or know why this is happening?
I have also read endometriosis can be found on nerves and it takes a special doctor to perform that kind of surgery. Does anyone have knowledge about that or a personal experience?
The pain in the groin could be inflammation caused by Endometriosis.
You are not giving your body enough time to heal. You are not going to be feeling better after a weeks time. If you are still feeling around the same in 4-6 weeks then yes I would bring this up to your doctor.
A lot of what happens is some people feel better as the wounds have started to heal but forget about how long it takes to heal internally. Also scar tissue starts to form and that causes pain as well at times.
Endometriosis can grow into the nerves yes. I had Stage IV deep infiltrating Endometriosis and it was everywhere you can imagine and deep. I had the best surgeon who removed all it, didn't leave anything behind and that is what is the most important.
Where you the one that had the DiVinci surgery? I have heard a lot of complaints from people about this type of surgery and also have a friend who had one done recently and now has frozen shoulder due to the way they position your body. The divinci is like a robot per say and its not quite as hands on as a surgeon getting right in there so I would have to say I would rather hands on than the divinci.
You need to sit back and rest. Don't push yourself or lift anything at all. You need to heal remember that it is imperative
Thank you for responding. I imagined i would need time to heal and i think i am probably over analyzing anytime i have pain now. I have just been in pain for so long im getting frustrated. It took so long for them to finally diagnose me and do the surgery that i get hopeless that i will ever feel better. i did have the Davinci surgery. I didnt do my research and was in so much pain i just went with whatever my OBGYN suggested. I could only take a week off work so im back at it but it definitely makes me feel worse to sit.
Can i ask what state you live in? Im wondering if i should get the surgery again but do it w a surgeon who excises it as you have mentioned? You say your doctor got it all... Has it grown back or can you rest assure that your endometrosis is gone? I just do not feel confident w doctors i have near me in Minnesota.
Two weeks before my surgey my groin and women area went numb when getting up from off the floor. It felt like something was shoved up there but nothin was. From then on i have had a bulge in my groin area. Its not a hernia though. Do you think i just pinched a nerve or if that had to do w my endometrosis?
I understand completely about feeling left in the dark and making choices you wish you could have changed after the fact. This is the issue with no awareness being raised about Endometriosis its like every women for themselves.
It took 14 yrs to diagnose me and the only reason I was diagnosed is because I happened to grow an Endometrioma, if I hadn't it is most likely I wouldn't be writing as a survivor or advocate for this disease.
I researched and diagnosed myself after going to 40+ since I was 13 yrs old all telling me it was either in my head or that I was fine and it was normal. I researched the best Endo surgeon and made my GP send a referral over to him and within seconds he found the rectovaginal cyst that I know was there since I was 14-15 yrs old.
Me I live around Toronto Ontario not in the US however if you are in need of a great surgeon I can look for one in Minnesota if you'd like.
I would not get another surgery as of yet. Wait. You don't want to keep going back in because the more you do it the more scar tissue and damage can be done. Let it heal and in six months time revisit the issue if you still do not have relief and find yourself an Endo specialist that specializes in Excision.
I had my first surgery in 2007 I had massive adhesions all the way up to my rib cage and a frozen pelvis. Everything was wrapped around my uterus, deep infiltrating Endo had to be cut out, rectovaginal cysts, etc. I had stage IV. My second surgery was Feb 2013 the reason I had to go back in is because I ended up with PID in 2010 and it caused serious damage along with abscesses that burst. So the surgery was a success the first time however damage from PID caused severe dense adhesions caused my ovary to embed into my pelvic wall along with my ureters. So I was peeing myself without having any sensation or I was in so my bladder pain I was crippled over. I also had to use Enemas 3 times a week for 3 yrs until finally someone operated on me. During this time I took Lupron, Visanne, Amitriptalyne,(sp?) Gapabentin (sp?) and Marvelon.
When I awoke from surgery the pain was not nearly as bad as my first one. Superficial endo was found so Stage I or II and severe adhesions from the PID causing my ovary to stick to my uterus and my uterus to stick to my bowel. Interesting enough they found a giant cell lesion on my bladder flap which is carbon residue from my first surgery when laser was used. However laser had to be used for that area because excision couldn't. So there are side effects of the laser and yes Endometriosis will grow back but if you excise it all out the chances are a lot less and will not come back as severe. During my first surgery in 2007 I had a PSN (Presacral Neurectomy) done where they sever the nerves from the spine to the uterus to stop the pain signal going to the brain. Usually this is done by a skilled surgeon only when someone has severe endo or heavy bleeding.
When you say bulge do you mean like skin like bump inside the vagina or a skin like hard nodule in the groin area? Or something falling out?
Twitter has thousands of Endosisters and I have found support with my disease with people I don't even know. They help me get through the day. People around me even when I tell them I have Endometriosis they look at me and as soon as I say reproductive or menstruation I have lost them and it is truly sad that we have to live with a disease where people can't be mature enough to talk about it or even listen.
So if you are looking for support as well Twitter is a great network. If you look on my profile you can find my username.
Also I am here taking questions at anytime as well as on twitter, however its always good to hear from lots of women that are going through what we are because it helps us mentally so you might find it useful to follow some Endosisters for support :)
I went and saw my OBGYN doc yesterday and he mentioned a lot of things to me.
1. He said he burned the endometriosis areas I had and said that gets to the root of the endometriosis. Does it really?
2. He is going to have me start Lupron shots has soon as they can get me in, so about two weeks. You mentioned having those. I have read the side effects. What was your experience with them?
3. He said I have endometriosis inside my uterus that he cannot get to. Is that true there is nothing they can do about endometriosis inside the uterus, besides a hysterectomy?
4. That my nerves sense any touch to my vaginal area as pain, and mentioned a pain medication for that. Do you know about that medication? He said I would start on the Lupron shot first.
5. I just got my menstruation cycle yesterday and I have heard that can make your pain worse. Do you know what that is? He mentioned something about blood bleeding into a muscle that was bruised... I didn't understand.
6. Is it possible by trying all these things, that I can minimize the pain enough to not need to have a hysterectomy? The doc said the only way to cure me of my pain for good was the hysterectomy. I am only 26 and may still want kids so I do not want to do that yet. All the women in my family (mom, aunt, gma) have had to have hysterectomy's for pain but their docs never found actual endometriosis so my doctor was thinking there endometriosis was inside the uterus.
7. The bulge I mentioned it just looks like a fat roll on the groin area. It is not hard. I did watch a special on tv about a woman's organs falling out after having the surgery with the Davinci robot. I do not think that is what is happening to me though. It just appeared one day after my lower area went numb. I had a ER doc evaluate for a hernia, had a pelvic exam yesterday, have had two CT scans, and transvaginal ultrasound. They have found nothing so there next best guess was inflammation from the endometriosis.
I had not joined twitter yet but I definitely will, since you said there is good support on there. My friends do the best they can to listen and cheer me up, but they don't truly understand the amount of pain and negative effect it has on my life. I am in that very dark, feeling alone, depressed place because I have not felt good in along time. The doctors even diagnosed me with fibromyalgia in January because they couldn't figure out why my body hurt, chronic fatigue, no energy. I am thinking it is all due to the pain in my uterus.
Thank you for the suggestion on the doctor in WI. That is definitely drivable and I will take your suggestion that in 6 months I will re-evaluate my pain and then take a trip to him if its not better. I can barely sleep or work because of the pain. I was hoping the surgery I just had would fix all my pain :(
1) No burning them and cutting them are two different processes and he is not educated it sounds like if he thinks laser will get to the root because it does not. There are times when the laser has to be used on certain things like bowels and bladder but a skilled surgeon can do most of that even excising it and minimal laser.
2) Everyone'd body reacts to meds differently. I have heard nothing but bad reviews, lawsuits etc and for me personally its stopped my periods and that is it. The side effects were too much to bare. There are some women who have handled it well. Here is the thing with Lupron. Most surgeons will go this route because it is all they know. They have been made to believe that Lupron suppresses the Endo from growing and that is false. The only thing suppresses your period does is stop ovulation and periods so that the pain is reduced.
3) If there is Endometriosis inside the uterus I can't see how he would know if it is inside, I find that weird of him to say. Any Endo can be removed regardless of where it is. Did he mention the word "Adenomyosis" That is similar to Endo but it is not the same and it involves the uterus and usually the only way to get rid of that is a hyster but there are other ways to treat it and its pretty much the same as Endo. Stopping your periods is your best option. Lupron you can only be on for a limited time as for me I have opted to be on a low dose BCP which has worked for me for the last 7 yrs. Every med works with every woman's bodies differently you might have to experiment.
4) Anything used for Nerve pain and Endo is usually Amitriptalyne also known as Evail. or Gabapentin both side effects I did not like but that doesn't mean it wont be the same for you. Because you just has surgery I would really wait to take those meds. A lot of organs have been moved around and your body needs to time to re-adjust.
5) Its normal to bleed after your surgery. I wouldn't worry about that. I think what you need to do is get on a form of BCP if you have been able to tolerate them and take it continuously with no break so you don't get a cycle. This is the thing after my first surgery I passed a blood clot the size of a book!!!
6) Your doctor is wrong and a complete idiot. A hysterectomy does not cure Endometriosis. Adenomyosis maybe but not Endometrosis. Endo will continue to grow and you could be worse off than you ever were. Do not get one unless you are 100% ready there are too many consequence to having one. You need to switch doctors this is my opinion. If one excision surgery is done by and Endo specialist 75% chance of it not growing back or causing further pain. The odds are not even close with laser. Please dont listen to this fruit cake that is tell you a hyster is the only way I can't express that enough. I know women who have had them and yes their symptoms have subsides and others the total opposite you have a 50/50 chance of not having to suffer with Endo again. The other 50 not in your favor is all the things that can happen after doing it, organ prolapse, early onset of dementia, more pain then you had before, etc etc.
7) as for the bulges can they actually see it and feel it? I would take some ant-inflammatories to try to calm down the inflammation see if that helps. Heating pad as well.
For sure make sure you join I will be there come find me :) username is in my medhelp profile :) lots of amazing endosisters out there. Huge network of love and support when you just can't get it anywhere.
This disease is frustrating I know but try to learn a lot about it so you have the upper hand when it comes to GP's and ER. Make sure you keep all copies of tests, surgeries etc. I cant express that enough. You will get pushed around if you dont.
The doctor did mention the Adenomyosis. I assumed that was the same thing at the time but now I have done reading on it. My mom told me last night why she had to have her hysterectomy. Its similar to problems I have been having. I was on bcp but then in September 2012 I was getting my menstruation cycle and it wouldn't come. I had been on bcp since 15 due to pain. I then got off the bcp beginning of May and then a month later finally got my bcp again. I also did a estrogen cleanse two months ago. I am afraid to go back on bcp because I was not getting my menstruation and I wanted to just get off of it to clean my body out.
The bulge you can actually see and feel. Dr.'s have felt it but do nothing about it. What anti-inflammatory do you recommend?
My Dr. seems to think he got all the Endo he could see by burning it. How do I convince another Dr. then in a couple months to operate on me again to go in and excise any Endo that is still there?
And when you say GP, what does that mean? General Physician?
With either Endo or Adeno the options are kind of the same to stop the symptoms and that is stop your period.
IAnti-inflammatorys like advil, aleve, or naproxen. Not great on your stomach however you can try natural remedies for similar natural products that are not drug related.
Yes Gp is that.
My opinion for you right now is to wait. Let it all register what has just happened and try not to stress out. Just try absorbing enough information as much as possible so you are educated yourself. When you go to the follow up ask for the surgery paperwork.
After 6 week you are in pain I would really try something to suppress your periods. It helps. Don't rush for a next surgery yet if you dont have to because remember the more surgeries the more scar tissue will develop
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