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Avatar universal

a few answers from my experience

hi my name is Amy and I have suffered from endometriosis since I was about 19. I am now 35 years old. I had a full hysterectomy at age 30. since then I have had kidney and bladder problem. painful sex painful urination. and problems using the bathroom in other ways too. I have to use enemas every other day. to the lady who asked if you can have children with endometriosis. I had to natural healthy births. although I did have many miscarriages trying to conceive a child with endometriosis. with endometriosis tumors followed. it made it extremely painful to have sexual intercourse with my husband. I'm not saying a hysterectomy is not the answer for you but I am saying with my hysterectomy problems just seem to get worse. I now have pain that goes from my spine into my right hip into my knee and down my toes. I also have problems with my kidney and my bladder. it is still extremely painful even after my hysterectomy to have sexual intercourse with my husband. if you have seen the commercials for the side effects of bladder mesh that's kind of what my pain feels like on a daily basis I have had to have two other surgeries since my hysterectomy I was led to believe that after my hysterectomy I would no longer get tumors but I did.. and they to head to be surgically removed now instead of being in pain 1 week out of every month I'm in pain everyday. although everybody is different  I encourage anyone debating on a hysterectomy to do your research very well see 2 or 3 maybe even 40 Bee Gees before you make this decision I have never had bladder or kidney problems be four they started within the week after my hysterectomy. if anyone has any questions about endomitriosis please feel free to contact me I am NOT a professional I have just lived with the disease for many years and have done a lot of research on it and I also suffer from what I believed to be consequences of my surgery.
4 Responses
136956 tn?1425609872
What most surgeons still believe is that child birth or hysterectomies are the cure to Endo and they are not.

If Endometriosis is not Excised from the root and just lasered only the surface will be removed leaving behind Endo to continue to grow. It is quite possible some of the issues you are having has to do with scar tissue however it is also possible the surgeon did not have the expertise to remove the endo during the time of the hysterectomy. I too had to use enemas and for a long time I thought it was adhesions which partly it was however I had another rectovaginal nodule grow back which should not happen if properly removed the first time. He is one of the Best in Canada yet not good enough.

There are a handful of surgeons worldwide that are top excision surgeons for over 179 million women, that being said the likeliness that the surgeon who operated on you might not have had the experience and you still have Endo.

Possibilities for you is Endo on the bladder and bowels that you may have had before but was never removed. Most surgeons leave it as they don't want to cause damage but the good surgeons remove it. also have you looked up IC (interstitial cystitis) before? you have symptoms of that but also could be endo related. They would have to do a cystoscopy to see inside the bladder to see if you have it. although Kidney and lung endo or vary rare it is still possible to have as well as on the diaphragm.
Avatar universal
in one week after my hysterectomy I started experiencing all the signs of interstitial cystitis after being tested over and over again and told that I had no kind of infection or STD and no reason for the pain that I was having I stop by a local doctors office and beg him to help me he is a urologist on spot he took me straight back and diagnose me immediately with interstitial cystitis I have seen to specialist since then for this disease they can find no signs of it but both agree with a first diagnosis. I would love to find another doctor to go in and do a laparoscopic surgery one outside of the doctors that I see everyone and I have spoken to said that upon removing your uterus they burnt the endometrium away this procedure was not done on me within a year I was back on the operating table having major surgery to remove yet another endomitrial tumor it was attached to my appendix to my right hip I'm now struggling to find answers on how and why I got worse after my surgerys. do using them not burning in dmitri s is out of me could be put is still causing problems on the inside of my body? I am desperate for help I've been living with this pain for 4 years! and before that I had to deal with the pain of endometriosis I wanted a child badly and my doctor knew that but he told me and my husband the only way I would love a pain free life is to have a hysterectomy there was no other way it broke both our hearts to hear the news that we would not have a child and even caused 3 years worth of pain and misery and our relationship afterwards I regret my surgery and wished I would've really studied more about this disease before I went through with a surgery such as this now I'm hearing and reading of other ways to treat endometriosis we could have at least try to have another child if that's true I underwent testing of my tubes and they were healthy the endometriosis had not settled in my tubes yet I've been living with this regret for 4 years now actually closer to 5 I keep forgetting I just turned another year older I was diagnosed at 29 and just recently turned 35
Avatar universal
in one week after my hysterectomy I started experiencing all the signs of interstitial cystitis after being tested over and over again and told that I had no kind of infection or STD and no reason for the pain that I was having I stop by a local doctors office and beg him to help me he is a urologist on spot he took me straight back and diagnose me immediately with interstitial cystitis I have seen to specialist since then for this disease they can find no signs of it but both agree with a first diagnosis. I would love to find another doctor to go in and do a laparoscopic surgery one outside of the doctors that I see everyone and I have spoken to said that upon removing your uterus they burnt the endometrium away this procedure was not done on me within a year I was back on the operating table having major surgery to remove yet another endomitrial tumor it was attached to my appendix to my right hip I'm now struggling to find answers on how and why I got worse after my surgerys. do using them not burning in dmitri s is out of me could be put is still causing problems on the inside of my body? I am desperate for help I've been living with this pain for 4 years! and before that I had to deal with the pain of endometriosis I wanted a child badly and my doctor knew that but he told me and my husband the only way I would love a pain free life is to have a hysterectomy there was no other way it broke both our hearts to hear the news that we would not have a child and even caused 3 years worth of pain and misery and our relationship afterwards I regret my surgery and wished I would've really studied more about this disease before I went through with a surgery such as this now I'm hearing and reading of other ways to treat endometriosis we could have at least try to have another child if that's true I underwent testing of my tubes and they were healthy the endometriosis had not settled in my tubes yet I've been living with this regret for 4 years now actually closer to 5 I keep forgetting I just turned another year older I was diagnosed at 29 and just recently turned 35
136956 tn?1425609872
I am so sorry that you have been through all of this. I am so sick and tired of being told by people that they have had or have been told to have a hysterectomy to get rid of the pain that is so wrong. I am going to ask around about that Endometrial layer I assumed they removed that at the time of hyster but let me be sure how it would effect you now.

I understand about the IC. I was diagnosed twice with the cysto being negative but was told by 3 endo surgeons that it was IC regardless and also my the IC network. They said you don't have to have inflammation to have it and Dr. Orbach of New york was at our Toronto symposium and said that 85% of women with Endometriosis have IC. I have all the symptoms of it.

What I would honestly suggest is seeing an Endo specialist. I can help you with that and I want to. You need the best care and the right answers as well as you being listened to not made to feel like its all in your head because us as Endosisters know our own bodies.

If you had laser not excision then it is very possible that you have a ton of scar tissue and laser causes more scar tissue form that is why excision is the GOLD Standard.

I want you to register with CEC (Centre of Endometrisis Care) in Georgia on their website. I will message you the link. Take this as your first step, this is what I recommend to anyone even if they don't live in Georgia Dr. Sinervo will read your surgery reports and your narrative of what you are going through and he will tell you the best actions for you. He is amazing and so is Heather who is the one that will be emailing you. They are caring and compassionate and its all for free just to have them read and its a start right? After that think about it and also I can tell you who the best is in your area.

Let me message you now with the link
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