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Pain finally diagnosed after 22 years and now pain is worse than EVER. Pain finally diagnosed after 22 years and now pain is worse than EVER.

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  #1  
Unread 10-28-2008, 01:50 AM
Pain finally diagnosed after 22 years and now pain is worse than EVER.

I am 38 years old. I have had left sided low back pain for 22years. I have been to countless doctors and had so many lame replys it is incredible to think how many REALLY terrible doctors there are out there. Finally, I found one gyn Dr. this past month who decided to do a CA-125. The value came back at 57. She said with this lab value, the location of the pain, and a 3.8cm complex left ovarian cyst the scale has been tipped towards a diagnosis of endometriosis. I can't tell you how relieved I was to finally have an answer to this terrible mystery pain. Now I am scheduled to have my Left ovary and Left fallopian tube removed on Nov 4th, 2008. I am hoping this will put an end to my pain. But reading from these posts I feel as if I am not being very realistic. QUESTION #1 In your experience how likely is it that I will be pain free until menopause (roughly 12years from now) with this surgery?

QUESTION #2 Would some others please describe in detail their pain to me? I feel like it would give me piece of mind to know that I am not losing my mind. I will describe my pain to all now: It is always on my left mid back. It almost ceases to exist when I am in bed. When I am up for more than 10mins the pain is a 10/10 on the pain scale. I often contemplate going to the ER for pain relief ( I have been before). But when I lie down it goes away. The pain is like a wave. It is always present but has surges every 2 to 3mins. Give or take. It does not radiate to other places in my body. The pain can be so bad I feel like fainting, vomiting. I do not have any bowel/bladder problems. The pain does not get worse or better around my period. The pain is so bad I cannot participate in my family life. Profoundly SAD. If I take HIGH DOSE ibuprofen every 4 to 6 hrs the pain is very well controlled. However, because I am scheduled to have surgery in less than 10 days I cannot take that now. I have been prescribed Vicodin. Which does NOT help. So I have agony. (On top of this pain, and not being able to control it with ibuprofen I HAVE to go to work for three days --12hr busy night shifts-- or I risk losing my insurance. Should be criminal.)

QUESTION #3 I think I will ask for BC pills post surgery. Will some others please tell me their experience with these? A) Did they work for you? B) Did you have to wait for some time after your one ovary/fallopian tube was removed to start taking them?

QUESTION 4?How many of you see a reproductive endocrinologist? Has this MD been more helpful? Right now I am just seeing a regular gyn MD. I will stick with her through Nov 4th and the post-surgery follow-up appt, but then may switch to the endo specialist. Hopefully, post-surgery I won't have to because I'll by symptom free. Meaning =no disabling pain. I did not know there was such a thing as "endometriosis specialist/reproductive endocrinologist" before this site.

A little more about my 22year endo experience:

I have had years of have no pain. As a matter of fact-before this bout and finally a diagnosis I had 5 years of no pain. Then strangely enough on Sept 15th, 2008 I was doing my exercise (walking) and the pain came on suddenly. I had to call my husband to come pick me up from along side of the road. Question #5 Has anyone else had periods (years) of no symptoms/no pain?

More about my endo experience:

It has been complicated by a history of kidney stones. When I was having pain I would think, "oh my chronic kidney stones are back again." I do not have any autoimmune disorders. My family has a strong history of rhuematoid arthritis. No one in my family has ever known that they had endometriosis.

And more endo experience:

My periods have always been fairly regular. This past 5 months they have been very heavy. Now I am late this month by 3days. I had an elective tubal ligation 3 years ago.

I am so scared I am going to be in this intense degree of pain for years to come. I know I can't take HIGH DOSE ibuprofen for years. What am I going to do? I am determined to keep my right ovary as I worry about the loss of endogenous hormones and the need for them to assist my heart, skin, and other organs. I am starved for helpful information. This site has been a godsend to me. I ask (plead) for others to respond to my questions. I am so scared of what the next month and beyond bring for me and my pain.

Thank you all. I hope to return to a state of good health.
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  #2  
Unread 10-28-2008, 06:46 AM
Pain finally diagnosed after 22 years and now pain is worse than EVER.

Big hugs headed your way! I'm 39, and had my first laparoscopy at 23 to find endo on my ovaries and cul-de-sac (behind uterus)---this is what was causing MY back pain and painful bowel movements during my period. After surgery, I did take BCP and I was pain free for quite a while (i also ended up being lucky enough to have 2 kids!)---anyway, it's gotten worse over the years, and tomorrow i'm headed for TAH/BSO--scared to death but very hopeful the pain will end!

Ibuprofen is my addiction...lol....i understand about the high doses!

you might do very well after they take out the endo---maybe b the time it causes you more problems, you'll be close to natural menopause?? You could look into BCP or the Mirena was suggested by y doctor--kind of settles down the estrogen and stops your periods....but PLEASE talk over your concerns with your dr......he should lay out all the options and then you can think about it!

It is a relief to know we're not CRAZY---i agree. I've always felt like people thought I was hypochondriac or something!

Off to the castle......will post on the post-op side..

Good luck to you!!!
  #3  
Unread 10-28-2008, 03:08 PM
Pain finally diagnosed after 22 years and now pain is worse than EVER.

NO! You are not crazy! But, this is a crazy disease. I have left hip/back pain. I t has at times been maddening. I had a large endometrioma on my left ovary. The pain has come back but after seeing specialists I know I have endo on my bowels and rectum and that is the source of my pain. I to am off to the castle for surgery on Thursday. Is your Dr. prepared if there is endo anywhere other than where he suspects? This is where a specialist is very important. I hope you find relief soon. It can be very exhausting.
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  #4  
Unread 10-29-2008, 12:22 PM
Pain finally diagnosed after 22 years and now pain is worse than EVER.

Hi Lilyrose

I'm sorry you are having this ongoing pain and hope your upcoming surgery relieves it. My complex ovarian cysts were both found to be endometriomas. I knew they'd be taking my left ovary with my hyst - due to those and my lifelong history left-sided pelvic pain. I ended up losing both ovaries due to the severity of my endo. Although it's improved over what it was, I often feel like my left ovary is still in there stabbing me.

Although I would hurt more days that not, my pain drastically intensified with ovulation, PMS and Menstruation. ≈ Some of what you describe sounds a little atypical of endo - but a lot of endo symptoms vary, so it may be "typical" for you - just like how some women have severe pain and some have none at all.

I found it interesting that your pain is relieved by the supine position, comes in waves when upright, you have some renal history with those stones, and (like many endo and back pain sufferers) you take high doses of NSAIDs ...which can be very hard on the kidneys. For this reason, I am wondering if you have had a current evaluation by a urologist or nephrologist? You said you've seen multiple doctors, so maybe you've already also seen a neurologist or orthopedic doctor too?

Did they see any endometriosis when you had your tubes tied? I wondered about endo for years but the N.P. I was seeing for my well-woman exams did not take me seriously until things showed up on ultrasound. For years, my subjective complaints fell on deaf ears. I take the blame - as I should have been a better advocate for myself. I got lucky with a new GYN because he just happened to specialize in microsurgery and had extensive experience with endo. If I were you, I'd look for a specialist from the get-go to make sure any/all endo is removed when the ovary and tube are removed. Although endo has it's typical/favorite landing spots and hiding places... not all endo looks alike, so you want someone who can spot it anywhere and remove it from risky places such as bowel & ureters, etc. Because the ureters function in waves (peristalsis) I'd probably specifically ask in advance to have those thoroughly evaluated too. Pain signals in the pelvis are whacky & unpredictable though, so who knows where yours is originating from is anyone's guess until they get in there. Any surgery is risky, so you want the best person for the job in any case scenario.

HysterSisters recommends getting a second opinion for any major medical decision <<< easier said than done, I know... but you're worth it.

I hope you find the help you need and achieve relief from your pain.

Gentle s & best wishes -
Beth
  #5  
Unread 10-29-2008, 12:51 PM
Pain finally diagnosed after 22 years and now pain is worse than EVER.

Hi ladies, I'm 26 and can relate to the horrible endo. At 18years old I suffered from extreme pain in abdominal and night sweats with and at that age I couldn't get answers. I was told normal, yeah okay! At 24 I had my first lap to remove endo but not all was removed(bowel nodule) ???
A year later I had another lap scheduled and was put on lupron before hand to see if would help, NOT!

Then 6 months later found a specialist because pain came back even wrose and so the specialist preformed 3rd lap. He removed my noduale and apendix. Life quality came back for a while but then I had to schedule 4th lap because of cyste on ovary. When doc went in he saw that the ovary was connected to leg and this would be why I would have sever pain in my leg and hip area. So on right side a BSO was done and took out more endo. 10/9 I had to have a total hyster and endo was found on cerix/ utures and there was nodule in vaginal area/bowel and BSO was done on left side.

Boy this is crazy, hope this is it with surgeries

Sorry ladies you are having this issue, my goes out to you all. Hang in there.
  #6  
Unread 10-29-2008, 07:17 PM
Pain finally diagnosed after 22 years and now pain is worse than EVER.

Hi! I'm so sorry it's taken so long for you to get some answers, I know what it's like to be in pain and not have a real understanding as to why.

I'm concerned about a few things you wrote and am wondering if you have had any "treatment" over the years? Birth Control Pills? Lupron? Depro? Endometriosis Removal?

You wrote, "the scale has been tipped towards a diagnosis of endometriosis" it sounds like they are not 100% sure it's endo. And I'm not understanding why the decision to remove your left ovary and fallopian tube?

Even hysterectomy is not a cure for endo, and there can be a lot of other serious side effects with hysterectomy that should seriously be considered.

I know this is an emotional time and probably the last thing you want to hear is that you should get another opinion, preferably from an endo specialist, but that would be my wish for you.

Whatever you decide, I wish and pray for the best for you.
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