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Opinions Wanted on pelvic pain poss endo Opinions Wanted on pelvic pain poss endo

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Unread 04-22-2003, 09:31 AM
Opinions Wanted on pelvic pain poss endo

Finally went ahead and called my gyn's office and made an appointment for next week. In the meantime, I am trying to get myself to answer a critical question "what do I think is the cause of the pain?"

Some history. Had endo diagnosed around 12 years ago. Have had 3 laps. One 6 month round of Synarel. One two month round of Synarel. (Synarel is the nasal spray form of Lupron). Tried DepoProvera and used BCPs for years. Finally, gave up and had TAH in November.

The TAH went really well. Gyn left my ovaries because they were healthy (I agreed to this) and he really did not find much endo (but he assurred me that he found enough to explain my pain). Recovered well. Then in January started having bladder troubles - frequency and urethral burning, but no infection (UA and culture) and some really sharp pelvic pain (both sides). Took detrol LA 4mg and felt much better, except for dry mouth. Switched down to 2mg and it did fine. After a month, I was able to quit and my bladder is fine.

Somewhere around a week after I quit the detrol, the pelvic pain started up. I am having some of everything. Left and right side pain that radiates down to my thighs. Rectal and vaginal pains. Positional pain during intercourse (same usual spot that usually indicates endo in the cul de sac area ... so yes, that position is avoided now that it is bothering me again). Pain the day after intercourse. Lower back pain. Pelvic pressure. Now, this intermittent pain (for the most part) and ranges from mild to severe.

But, hey... my bladder is fine.

Here's what I am really curious about. I am wondering if it is possible that I am having some muscle spasms of some sort rather than a return of endo? I am just trying to make some sense of all this and prepare for anything. That's just how I deal with this.

Any words of wisdom?
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Unread 04-22-2003, 09:41 AM
Opinions Wanted on pelvic pain poss endo

I don't know how to put a link in my message. You should read Sheri's message entitled "Recurrent endo after hyst". It has some very interesting info you should read.

I'm sorry you are in pain.
Unread 04-22-2003, 11:28 AM
Opinions Wanted on pelvic pain poss endo

I think this is the thread imalith is referring to https://www.hystersisters.com/vb2/sho...threadid=97987

I'm sorry you're still having pain. Although I didn't have endo I've had to endur one problem after another and continued pain after my hyst. I hope your doctor can help to shed some light on your problem.
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Unread 04-22-2003, 01:54 PM
Opinions Wanted on pelvic pain poss endo

Imalith and Kim:

Thanks so much for your posts, especially the s
Unread 04-22-2003, 05:03 PM
Opinions Wanted on pelvic pain poss endo

Here is some more info that I thot might hold some more insight on this

Endometriosis Conquering The Silent Invader:

Recurring Endo at the Center For Endometriosis Care:

Endometriosis-Dr. Stanley West:

Endometriosis Treatment Program @ St. Charles Medical Center-Bend, OR-Dr. David Redwine:

Hysterectomy & Endometriosis Questionnaire:

Post-Op Ovarian Suppression:

Incisional Endometriosis:

Endometriosis Research Center:

Radical Endometriosis Surgery:

HRT and special situations: Endometriosis and post-hyst HRT

It is now becoming accepted that a hysterectomy/oophorectomy does not “cure” endo, although it may remove some of it. The most realistic expectation of the surgery is that subsequent use of HRT may provide a more stable hormonal environment with less endo stimulation. Because estrogen stimulates endo growth (just as it stimulates proliferation of the uterine endometrium) and progesterone inhibits it, current post-hyst endo management theory calls for the addition of progesterone to estrogen HRT. This is to avoid the stimulation of endo proliferation and the risk of converting that endo to a cancerous state. Many endo specialists also call for a post-op period (varying from 6 weeks to 6 months to “as long as you can stand it”) without HRT, in order to encourage any remaining bits of endo not removed during surgery to shrink away. Some take that a step further and prescribe the use of progesterone alone to directly squelch that endo growth. This has the additional benefit of helping ease some of the transitional menopause symptoms experienced during the wait for estrogen.
Not all doctors espouse this theory, of course. Some surgeons are highly indignant at any suggestion that they might not have cleared all traces of endo; others freely admit that microscopic bits of endo are virtually guaranteed to remain and require other treatment. We're not going to argue with your doctor's take on the situation, other than to suggest that if your doctor insists that all endo is gone and you continue to experience post-op endo-like pains, you might want to research this part of the question further. We aren't endo specialists, but we have a few links on our links page that may be useful in your researches. Endo is a long, grim battle, and it's sadly not one that seems to be over after a hyst.

In addition to progesterone, you may want to look into other measures to help with your estrogen deficit. You will need to work very hard on maintaining your bone density and keep an eye on your overall cardiac measures such as cholesterol and blood lipids. Both of these profiles see their most rapid rate of change in the year after ovarian hormones decline. Many of the symptomatic relief measures may also be helpful. In particular, use of an SSRI or St. John's Wort may be required if depression and hot flashes become debilitating. It's important to bear in mind that some of the herbal estrogen-alternatives are fine to use and some can totally undermine the point of going without estrogen. As a rule, black cohosh is considered effective in relieving symptoms without having effects similar to estrogen. Red clover's picture is not as clear, and it is also not as clearly demonstrated to be effective. Soy, which is often used as an estrogen supplement or alternative, should be avoided in endo suppression just because it has some of the same capacity for endometrial stimulation as estrogen. Taking the adrenal precursors (DHEA, pregnenolone) is a little questionable as they can ultimately be converted to estrogen; testosterone supplementation during this period will probably also be hijacked for estrogen production, so may not be wise. Even caffeine, as noted at WebMD, stimulates elevations of circulating estrone, an estrogen, and may be implicated in the exacerbation of endo. Check all this with your doctor, of course—but remember the bottom line: if any of these do stimulate further endo, you are the one who suffers. And you know what that's like. Since it only has to go on for about 6 months, our feeling would be to be as conservative as possible rather than risk more endo. But you have to decide this for yourself.

November 14, 2002
2002 NOV 14 - (NewsRx.com & NewsRx.net) -- A majority of women who suffer from chronic pelvic pain have been told that their pain is "normal" or even exaggerated despite their own perception of it as severe and debilitating.

Ironically, these comments are coming from the people they rely on most for support - their physicians, families and friends - according to a survey conducted by the Endometriosis Association and released at the 58th Annual Meeting of the American Society for Reproductive Medicine in Seattle.

The survey found that 40% of women who suffer from chronic pelvic pain due to endometriosis or the formation of postsurgical scar tissue have been told they exaggerate their pain. More than half (52%) were told this by their ob/gyn and 43% by a friend or family member. Nearly 60% of these women have been told that their pain is normal. Of these, 56% were told this by their ob/gyn and 29% by family or friends.

"The results of this survey are concerning given the impact pelvic pain can have on a woman's life," said Mary Lou Ballweg, president and executive director of the Endometriosis Association, who announced the data. "On a regular basis, we see women completely alter their lives because of the debilitating effects of pelvic pain. The frustrating part is that it often takes years for women to receive a diagnosis, and by then, many are unable to work or fully participate in normal activities."

In fact, 43% of women surveyed describe their pain as constant. More than half describe the intensity of pain as severe to unbearable (26% say it's severe, 18% say very severe, and 9% say unbearable). At this level of pain, it's not surprising that more than 80% say they have been unable to work at times due to pelvic pain, and 45% say they have been debilitated for 2-3 days or longer each month.

"Chronic pelvic pain accounts for 12% of hysterectomies and 40% of laparoscopic surgeries. The total costs of treating chronic pelvic pain are more than $2 billion each year," said Dr. Charles Miller, reproductive endocrinologist, gynecological surgeon and medical director of Specialists in Reproductive Health in Arlington Heights and Naperville, Illinois. "As I've seen with many patients and with this survey, chronic pelvic pain also exacts a significant emotional toll, which makes it even more important that women speak to a doctor at the first signs of pelvic pain."

The survey of 968 women ages 15 through 59 with endometriosis and/or postsurgical scar tissue was designed to uncover specific information about women's experiences with chronic pelvic pain. The survey, conducted by The Endometriosis Association, was cosponsored through a restricted educational grant by Gynecare, the women's health division of Ethicon, a Johnson & Johnson company, and Purdue Pharma L.P.

Two of the leading causes of chronic pelvic pain are endometriosis and the formation of post surgical scar tissue, also called adhesions. Of the women surveyed, 89% had endometriosis, and nearly 40% had been diagnosed with adhesions.

Endometriosis is an immune and hormonal disease that affects 5 million women and girls in the U.S. It occurs when tissue similar to the lining of the uterus (called the endometrium) is found outside the uterus, usually in the abdomen, on the ovaries, or on fallopian tubes.

Postsurgical adhesions are abnormal bands of scar tissue that form inside the pelvis after gynecologic surgery. Endometriosis can also cause adhesions.

As many as 90% of the 3 million women who undergo gynecological surgery each year to treat common female health problems such as ovarian cysts, fibroids and endometriosis, will develop adhesions.

Ironically, women who undergo pelvic surgery to correct endometriosis or to remove adhesions (a procedure called adhesiolysis) are at risk for developing pelvic pain from new formations of pelvic adhesions.

However, new treatments are available to help stop the recurring cycle of pelvic pain. A variety of treatments can help treat pain due to endometriosis, and doctors now have tools to help reduce the risk of adhesion development after surgery to treat endometriosis or remove adhesions. Women should proactively talk with their physicians about chronic pelvic pain, its underlying causes and how it can be treated, or even prevented, in some cases.
Endometriosis of the bladder area: Description:
Your bladder occupies the space in the front of your uterus and is loosely covered by peritoneum, allowing it to expand as it fills with urine.This expansion process should be totally painless. Endometriosis of the bladder area usually begins with superficial implants; many of them remain as such, causing local irritation and superficial scarring.On occasion, the implants will start growing into the deeper layers of your bladder wall, creating artificial attachment of your superficial peritoneal lining to your bladder wall.

Symptoms: Low abdominal and pelvic pain, usually in the middle, is the most common symptom. Your pain may be aggravated by bladder distention and by sexual intercourse.In the case where your bladder wall is actually penetrated by endometriosis, your symptoms may include pain with urination and the presence of blood in your urine, especially during menstruation.
Endometriosis of the posterior cul-de-sac

Description:The posterior cul-de-sacis the space behind your uterus. It is surrounded by your uterus in the front, pelvic sidewall and ovaries on the side, and your sigmoid colon in the back. The floor of your cul-de-sac contains your uterosacral ligaments, your rectum and the upper portion of your vagina.The posterior cul-de-sac is one of the most common locations of endometriosis in the pelvis.Most of the time, the implants are quite superficial, but in a number of women they will invade deeper into the tissues. They may form nodules within your uterosacral ligaments, they may cause attachment of your sigmoid colon and rectum onto the posterior wall of your uterus. This causes the most extreme form of the involvement, cul-de-sac obliteration.

Symptoms: Constant pelvic pain/ache is the most common symptom.The pain is usually more severe during menstruation and is usually located in your lower abdomen and lower back. Pain may extend to your upper thighs and your rectum and there may be deep pain in your vagina during sexual intercourse, many times preventing normal sexual relations.There also may be pain with bowel movements.
Endometriosis Q&A

Endometriosis Despite Hysterectomy

Communications—One Key To Survive Endo

If you'll do a search for Endo also it will turn up several threads w/((Sisters)) suffering this Post-op...good luck..pls keep us posted..((hugs))
Unread 04-22-2003, 06:00 PM
Opinions Wanted on pelvic pain poss endo

Michelle I am so sorry you are in pain. I can only tell you from my experience that I too have stage 4 endo - TAH/RSO in Dec 2002 (left ovary and tube were removed in Dec 2000) - right now am looking at another surgery in July for ovarian remnant. This little remnant has been feeding the endo that was left. I can tell you this - I have never been in so much in my life - I take either percocet, vicoprofen, or demerol EVERY day. I thought after my TAH I would be cured - well I thought wrong. From the research I have done - you really need a surgeon who is skilled in endo.

Please let's us know what your doctor said.

Good luck!!
Unread 04-22-2003, 07:59 PM
Opinions Wanted on pelvic pain poss endo

I must say, when the endo returned it was much more painful than when I went to the hospital for emergency surgery for the TAH/BSO. Fortunately, I had no ovaries. I discontinued taking the HRT and the endo pains went away. I feel great now. Things can get better.
Unread 04-22-2003, 10:45 PM
Opinions Wanted on pelvic pain poss endo

Hi Michelle.... Here is a HUGE for you!!

As you know., I am battleing the same endo pain as before my hyst as well. I really have no words of wisdom to give you right now since I have no clue is it is the endo or if it is just adhesions.

Hopefully I can be of more help after my lap next week. I am so gald you finally made an appt though. Please let us know how it goes.

Unread 04-23-2003, 10:14 AM
Opinions Wanted on pelvic pain poss endo

Thanks everyone for the replies and information. Not looking too good on my "maybe its NOT endo this time" hypothesis. [Wishful thinking.]

I'll let you know what says after next Tuesday.
Unread 05-01-2003, 01:44 AM
Update ...had appointment

Just wanted to give a quick update. Went to my on Tuesday. Said he "of course" could not tell me exactly what was causing my pain, but since I ruled out my bladder and bowels he thought it was probably a combination of endo and ovulation related pain.

I brought in a calendar (of the last 5-6 weeks) which showed what kind of pain I was having and when. Since he thought that at least some of it seems to be ovulation related, by suppressing ovulation I would get some relief.

So, the choices he gave me were:

1. continuous BCPs
2. lupron
3. oophrectomy

I have been on 1 full and one partial course of Synarel (nasal spray form of lupron) and am really concerned about bone loss. So, that is out for now.

Really have gotten attached to my ovaries since the hyst and would llike to keep them, if I can. Just seems too drastic to remove them now ( agreed but is willing to do whatever I want).

So, I am trying the continuous BCPs. I started yasmin on Tuesday. I am really concerned about weight gain and hopefully these won't make me too hungry (as other BCPs have). He gave me samples with a "money back guarantee" that I would not gain weight

I am supposed to keep track of my symptoms for the next 2 months and then go back in and talk to him about how its going.

Having a bit of insomnia this morning It's 2:26am here. Woke up at 1:00am and could not get back to sleep. I am sure this is just a hormonal adjustment.

Thank you all for being so supportive. I am quite fortunate to have ya'll.

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