Recurring Endometriosis?

I am writing this because I am very concerned about my partner. She had a lot of pain from what we found out to be endometriosis last year, and she had a lapro last summer. The endo was moderate, 2 main areas upto 4-5cm in diameter, but the pain was severe, and she was taking opiate-based medicine when things got really bad, which they often did.

After the op, the pain stopped, but gradually more and more, even from shortly after the op (after the wounds had healed), she said she had pain during intercourse, which has got progressively worse.

Another point is that she was taking the regular birth control pill for a number of months after the op, around 6-7 months, then decided to stop taking it, which I strongly advised against.

Over the weekend, we we made love, and she had to ask to stop as the pain was too much, as has also happened recently in the past, but this time was worse.

Now she has just told me on the phone (as we don't live together) that she has been up all night with ovarian pain, which is very concerned.

She's not been taking the opiate-based painkiller, as it's not good to get used to it, but she has been suffering more and more lately.

Shortly after the op, I said that the pain couldn't realistically be endo returning, as it was so soon after the op, and urged her to go to the doctor, which she did and the doctor couldn't explain it.

The only possibility I could think of and have read about is that when the doc did the op, he didn't remove all the endo and it grew back, but that is extremely unlikely so we pretty much dismissed that idea.

However, what are the chances she has recurring endo now, and what's the solution?

Many thanks and best regards,
Chris

Too bad you wrote this a month ago and no one responded. My wife had three operations before they finally got everything removed. The reality is, most doctors are just not that good at what they're doing. after the first two botched attempts we really researched to find a leading specialist in Japan, who performed an amazing surgury since my wifes case had progressed to something pretty severe. As a result of the first two missed opportunities to treat her while it a mild case, our chances of conceiving a child are quite low now. Make sure you get back in there and get it done right.

My wife had her Surg. done in July. She was also felling much better. That is, for only 3 months! Now her pain is returning too! She is scared right now. We have already been to the ER twice in 3 days for severe level 10 pain. We are going to see a specialist. She was also on heavy pain killers before the surgery. She refuses to take anything harder then vicodin because she does not want to go through the withdrawls.

My question is, is it common for the surgery to not be done right the first time?

You've got to figure on the level of involvement. There are a lot of areas that they can't get to readily, and if the endo has grown to be wrapped around organs it can be causing pain.

I'm so glad to see men on here taking up for and defending their partners - it's one of the best things you can possibly do is tell her you're there for her and show your compassion and support. Because I'm going to tell you as a woman that's been through Stage 4, there's precious little that will make you check your sanity like this will. It breaks down self confidence by attacking your body, destroys your sex life, wrecks havoc on your intimate relationships and leaves you so exhausted from the pain that just getting through a normal day is a huge accomplishment. The social attitude of "suck it up and deal with it" isn't mentally agreeable when you feel like you're doing all you can just to get to "go."
So thanks for taking up for your wives, guys.

I was diagnosed in 1999 with Endometriosis, was only 23. I had suffered for a year and my Dr was no use, she just kept fobbing me off with excuses until I broke down in tears in her romm and begged to be send to hospital for tests. I had a laparoscopy which confirmed my suspicions ( i had a friend who suffered from it as well ).
I was put on a course of Injections (Prostrap) for 6 months, and they decided to laser away the rest after the 6 months. I went for the operation, but when I came round they said that they remaining endo was too near to my bowel so they had to leave it alone.
I got on with my life, it didn't seem to bother me much after that, then 4 years ago I had my firsst baby, conceived naturally and it only took 5 months, then 2 years later i fell pregnant again. I have been blessed that I have been able to conceive with no problems and I feel for all those women out there who have trouble. Anyway for the past 4 years I have had not pain whatsoever, until these last 7 months it has returned. This time now I not only have the pain to contend with i am suffereing from constant bouts of Diarrhoea,or constipation. I constantly feel exhausted and sick. I have made an appointment wth my doctor ( a different one this time lol). My message to you all who are suffering, or suspect you have it is do not give up, this is one nasty disease, but together with support from, family, family we can beat it.
Love
Julie

Hi everyone. I am 32 years old and developed endometriosis at age 23, after the birth of my 3rd child. I suffered through the pain for more than a year before seeing a doctor about it. I bled between periods, had severe cramps, back pain, painful intercourse. My doctor put me on Lupron for 3 months, which sends you into a premature menopause of sorts. It was awful for me...hot flashes and extremely irritable. Once the effects of the Lupron wore off, it was back just as before. My doctor then decided to do lap surgery, which helped for a while. Then, she tried to put me on birth control pills to regulate my hormones, but they made me gain weight, and I hate taking artificial things so I quit taking them and decided to suffer through it. Over the next 5 years my doctor encouraged me to try to conceive, as that might "cure" it for me. Finally, I went ahead and conceived my 4th child. Much to my amazement, I felt wonderful...for 2 1/2 years. THEN, just over 1 year ago it came back with a VENGEANCE! This time I have EXTREME back pain that begins about 10 days before my period and doesn't go away until 2 or more days AFTER my period! It hurts to sit, stand, walk, lay on my stomach. The pain radiates from my lower back around to the front pelvic area, into my hip bones and down my legs. It makes me limp and cringe and walk like an elderly person...it is so bad. My bowels give me a LOT of trouble! I've started to bleed again after intercourse, and have been trying to conceive (we want 5 kids) for 10 months, with no success. I've always been able to get pregnant VERY easily...until now. I'm undecided whether or not to do another lap surgery in order to have one more child, or get a hysterectomy. The latter option scares me...I do NOT want to gain weight from that, and it really wreaks havoc on your body. I continue to just live with it while I decide what route to go from here. Pray for me to get pregnant-I want another girl. Anyone with questions can ask me anything, I'd love to help, as I know how terrible it is.

Hi, I had a exploroatory laproscopic and endometriosis was discovered. This was removed along with scar tissue from a removal of a cyst on my right ovary 14 years ago my ovary was also removed. I did well throughout the years after sugery and even had a baby. My concern is after having this recent surgery, my doctor is anxious for me to have Lupron injections. I feel fine after surgery and I just want to know if anyone can relate to my story of feeling good after surgery and hearing all these stories of lupron really has me cautious of taking the injection. can anyone please comment?

I have had endo for 13 years. I am now 32 with one child. After 7 laps, all kinds of birth control pills, lupron, paid meds, I am having the worst pain in my 13 years of having the disease. At the time nothing can be seen by ultrasound but I KNOW something is there. I have also had surgeries where nothing could be found but we know there is something hiding. The Lupron experience was horrible. I did it for one month 10 yrs ago. It made me depressed beyond belief, anxious, made me have breast milk, no sex drive, dry skin. I felt like a wrinkly, cranky old woman. Then somehow my OB GYN convinced me to try another run this past summer. I thought, hey maybe science has changed or my body is different. The pain was absolutely GONE after doing the shot but again came all of the very ugly side effects, esp depression. I had to start on antidepressants. It was then I decided I would much rather have the pain and take strong pain meds than have the menopause and feel like there's an alien is living in my skin. Not to scare you away from trying. It only works a month so if you try it and hate it you don't have to suffer that long. Plus the pain really does go away. About finding a good surgeon who will acutally take the time to find all the hidden endo, I think I will have to do that sometime as well. But first I am doing something I should have done 13 yrs ago--I have an appt at a pain clinic to finally get a handle of my pain. After my last surgery, the surgeon also told me something like, "I removed the growths from the tubes but I probably didn't get it all" I think I have some on my intestines because I have pain high on the left side near the hip. Also I have had to have two colonoscopies done and even with the highest dose of pain meds I had excruciating pain. That dr. supposed I had adhesions somewhere. The hardest part about this past year where the pain has gotten worse is that my friends are calling me less and less. I am no longer the cheery, upbeat, funny me. I am tired, always telling of pain (twice a day I get horrible breakthrough pain despite a 12hr narcotic painkiller). I can't do as much as I used to and especially don't go out with my friends like I used to. I feel like I am just a walking disease that nobody really understands or cares about. I will get comments like, " oh my friend had endo but she didn't seem to have that much troube".This illness is as individual as we are. It's symptoms are so strong. I am beginning to get the chronic tiredness and poor immune system with constant infections. I am sitting here reading all your posts with my husband and it helps him as well to understand me more.Thanks for listening to my ever-developing Endometriosis Story.

Hi Carla! My experience with Lupron was very bad. I was so iritable and cranky I didn't know myself anymore. I gained weight, was fatigued and it didn't help, the pain just came back soon after I got off of it. No one can tell you what to do, you may respond differently to it, but MOST people I've heard from have had a bad time on it. Hope that helps. You are in my prayers, dear.

Hi Emily! I'm so sorry to hear how this is affecting your entire quality of life. You're right, it is different with each person, and your case sounds particularly debilitating. A forum like this one can be therapeutic and friendship building. It's nice to have people to talk to who actually KNOW what you are talking about. You have developed a resistance to your narcotic painkillers, which is why you are having breakthrough pain, and your body will keep demanding greater and greater doses. This is very dangerous for you, as you WILL become addicted! PLEASE try to wean off of them, your husband is your greatest support, he needs to know how dangerous the drugs are, and help you get off of them. There are a lot of natural things you can do, have you ever tried to deal with the pain by natural methods? Exercising is one way, drinking lots of water and getting plenty of rest. Narcotics will only further compromise your health, weaken your immunity system and age you quickly. I can help steer you in a natural direction, if you need information about it please let me know! I'm praying for you, Emily.

I don't know why my first post has me living in Houston, Texas and the other 2 posts in Pittsburgh, PA.!! I live in Michigan!

Iam 30 and have been suffering with endo since i was 15. I had ended up in hospital loads of times with servere preiod pain and hospital even took my appendicts out. i was 19 when i was told i had endo,and was told it was almost impossible for me to have children as it was everywhere. Incredibly i did get pregnant and my pain went after chid birth. i had another child aswell. Then 7 years later it returned with a vengence. i have had 3 lapo, provera, birth controls, and every pain killer there is. sum months i am bed ridden as the pain is too intense. i also feel like the docs think its in my head, my laet lapo was oct last year and doc said he couldnt find anything, i came home and cried for days because i know there is.i hav been in pain for the last 3 days, back ache,shooting pains, the feeling that my womb is that heavy its going to fall out,i am so tired but cant sleep, even the painkillers dont help me sleep. my legs like jelly. if i could rip my stomach out i would. i just want to be normal.

hi jules you,ve given me hope. i am 24 years old and from when i started my periods from the age of 12 i have had really bad periods. they started with me vomiting because the pain was that bad. i was slumped over clutching my stomach for the first 2 days of my periods. at the age of 19 i was rushed into a&e (leading up to this i was getting rushed in on the first day of every monthly) where they would give me pethadine or morphine. morphine was the best because it made me sleep. so when i went in this time, they took me for a scan. where it showed the endo. i had the operation. they removed the cyst from my right ovary.for a while i was ok but last year i thought i could feel something on my right side again. my fears were confirmed when i had another scan. it had come back. anyway ive had my second op and am on my fifth protrap injec. the hot flushes are a horrible but i hope am better now. but more than anything i want a baby. the gynae said allow 3 months after the last injection. i hope i get pregnant soon.

Hi. I had surgery in June 2007 for an 8 cm ovarian cyst and endometriosis at age 24. I am now 25 and experiencing pain again. I have had terrible periods all my life too. I ended up in emergency a few times before the surgery to get needles for the pain and nausea. I also ended up in the hospital in January of this year just 6 months after the surgery and they couldn't find anything so they assumed that it was a cyst that ruptured. That was my 5th cyst. I have had 3 on my left ovary and 2 on my right ovary. I told the surgeon to just take out the ovaries because I hate living like this but I want to have children so the surgeon refuses to do so. So my next step is go back to my family doctor to see what my options are. I can't take birth control because I am prone to migraines which the birth control made my migraine attacks unbearable to the point of going for needles also!

If your partner needs more surgery (which sounds likely) she needs to find an EXPERIENCED surgeon.

You might try searching
http://www.endometriosis.org/