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Endometrosis after hysterectomy Endometrosis after hysterectomy

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  #1  
Unread 08-05-2003, 09:37 PM
Endometrosis after hysterectomy

I went to the gyno today for the severe pain I've been having and he said even though I had my uterus taken out I could have endometrosis.
Crazy, but he said it's possible if any tiny little bit of endo was left in me and since my ovaries are in good working condition they could trigger it to grow out of control. Yeah for me.
I'll be on Lupron to see if it helps, that will lessen my estrogen, so I get to have hot flashes and all that fun stuff then they will put me on some meds to lessen the side effects of the lupron.
Lupron has to be pre-certified by the insurance company and that will take up to 7-10 days, then I'll get the Lupron shot, then after about 6 weeks it MAY help my pain, if in fact it is endometrosis.
If it doesn't help then it's more than likely scar tissue and back to surgery. This would be #13. (I've also had a surgery for tonsilitis, gallbladder and a breast reduction)
BOOOOOOOHOOOOOOOOOO
Just thought I'd find out if anyone else had gone through this.
Also, I think I had read somewhere about some type of netting used in surgeries to lessen the scar tissue growing. Sound familiar?:confuse:
I'd appreciate any information.
PS I also let the nurse in the gyno office know about this site and asked her to pass it along to anyone who may be facing surgery or has gone through it.
Thanks for listening,
fosterkat

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  #2  
Unread 08-07-2003, 11:54 AM
Endometrosis after hysterectomy

(((fosterkat))),
I'm so sorry to hear you are still battling this nasty disease Unfortunately, we have several (((Sisters))) here dealing w/ recurring Endo post-Hyst:-( It's sad that more Drs dont tell their patients that a Hyst is not cure for Endo, there is alwys a chance it will come back. Many Surgeons will remove the Organs alone ( when in fact, most Endo implants occur on the pelvic sidewalls, cul-de-sac..) they leave the Endo behind hoping by with-holding HRT (estrogen) that it will die off. Some Researchers now believe Endo can produce it's own Estrogen There are some here that had EVERYTHING removed, took no HRT, implants were excised & when they underwent diagnostic surgery, they were covered by Endo again. The best thing many of us have found we can do to help ourself is to Research & educate ourselves on our DX's & symptoms. Many times we are told we have nothing left (female organs) so there is nothing to cause pain, it's in our heads ect.. it has b/c half the battle for many just to have our pain validated! So your 1 step ahead
By seeking out knowledge, treatment options, alternative treatments & the success rates, risks they carry we our better armed to make a descion based on what we know on what the best treatment is for us. Remember, it is your body & only you have to live w/ the outcome of any of the above I'm gonna give you some links & info on recurring Endo & options that will hopefully provide you w/ some more insight on what your dealing with....
BTW~Knowledge is power exp. when we must be our own Advoctes for our Health!

Endo - Treament Options:
http://www.reproductivecenter.com/radical.html
http://www.endometriosistreatment.org/

Endo Specialists & Resources:

http://www.hcgresources.com/resources.htm
http://www.geocities.com/friday_sfws/ind.htm
http://www.endoangels.com/links.html
http://www.lupron.com/

Painful Signs of Endometriosis Should Be Taken Seriously:
http://www.nytimes.com/2002/07/09/he...th/09BROD.html

  Quote:
Also, I think I had read somewhere about some type of netting used in surgeries to lessen the scar tissue growing. Sound familiar?
FosterKat, here are the latest Adhesion Prevention Products not all are available everywhere. There are also many Drs. who are not well-versed on them or trained in their use & placement...

Can Adhesions be prevented?
  Quote:
The only way to treat adhesions is to remove or separate them surgically. This procedure is called adhesiolysis. Studies have shown that patients with pelvic pain and severe adhesions can experience a marked reduction in symptoms after adhesiolysis.

Meticulous surgical technique:

Careful surgical technique can help minimize trauma, minimize the interference with the blood supply, prevent the introduction of foreign bodies, minimize bleeding, lessen the incidence of raw surfaces and decrease the incidence of infection - all of which help reduce adhesion formation.

Although adhesions often form after gynecologic surgery, they are not inevitable. And, even if adhesions do form, they usually don’t cause pain or other problems.

Although there is no way to eliminate the risk of adhesions completely, there are steps your surgeon can take to reduce the likelihood of adhesion formation. The most effective methods of adhesion prevention involve meticulous surgical technique and the use of a physical barrier to separate tissue surfaces while they heal.

Surgeons have developed minimally invasive techniques such as the laparoscopy, that are designed to minimize trauma, blood loss, infection, and the introduction of foreign bodies, all of which can lead to inflammation and adhesion formation. Good surgical technique involves minimizing tissue handling, using delicate instruments, and keeping the tissues moist when they are exposed to the air.

While good surgical technique is important, it is often not sufficient to prevent adhesions. There are also other preventive steps that can be taken:
  • Your surgeon may use a lightweight fabric barrier, such as GYNECARE INTERCEED Absorbable Adhesion Barrier, to enhance good surgical technique. This barrier, placed at the site of the surgery, is intended to protect raw tissue surfaces as they heal. Fabric barriers have been shown to be one of the most effective methods of adhesion prevention reduction and prevention.

    Barriers – Fabric or liquid barriers create a physical separation between raw tissue surfaces while they heal. Thin tissue-like fabric barriers may be used to try to reduce adhesion formation at specific sites, while liquid solution barriers can help prevent adhesions over broad areas of the abdominal and pelvic region.
    GYNECARE INTERCEED:
    Barrier is a lightweight, tissue-like “fabric” that can be placed at the surgical site. The fabric protects and separates the surfaces where adhesions are likely to form. The fabric slowly dissolves as the surgical incision heals. Studies demonstrate that GYNECARE INTERCEED Barrier significantly enhances good surgical technique in reducing adhesion formation.

    GYNECARE INTERGEL:
    Solution is a liquid that can be poured into the pelvis after surgery to separate and protect organs and tissues as they heal. The solution is easy for the surgeon to use and can be applied directly to the surgical site. Even more important, GYNECARE INTERGEL Solution covers a broad area and provides protection against adhesions.
http://www.ethiconinc.com/womens_he...roduct/faq.html
  Quote:
"If the adhesions are extensive, and the patient has undergone previous adhesion surgery that failed, I have taken an unorthodox approach to such individuals. Because adhesions begin to form almost immediately, along with the healing process involving the raw anterior abdominal wall, I have in special situations recommended a repeat laparoscopy in one week. At this point, the "new" adhesions are flimsy, soft, do not contain a blood supply, and can be swept away with minimal tissue injury, compared to a conventional adhesiolysis (freeing the adhesions surgically) of old adhesions that are dense, very adherent, and bloody. This is performed in an outpatient setting, and usually takes but a few minutes, compared to the time involved dealing with extensive, dense old adhesions."http://medseek.com/glennbradley/newsdetail.cfm?ref=264
www.Adhesions.com
http://www.dyspareunia.org/html/pel...prevention_.htm
http://www.dyspareunia.org/html/pelvic_adhesions.htm

Adhesion Prevention Home Page:
http://www.adhesions.com/welcome_main.html

Proven Adhesion Prevention:
http://www.genzymebiosurgery.com/op...evel=2&opage=66

Welcome to SPRAYGEL :: Adhesion Barrier: http://www.confluentsurgical.com/spraygel/usa_home.htm

A Meta-analysis of Interceed Barrier Safety/Efficacy:
http://www.adhesions.com/clinical_studies.html

Interceed:
http://www.ethiconinc.com/womens_he.../interceed.html
Contemporary Adhesion Prevention:
http://www.centerforendo.com/news/a...s/adhesions.htm

GYNECARE INTERGEL® Adhesion Prevention Solution:
http://www.fda.gov/cdrh/pdf/p990015.html

Seprafilm surgical intestinal adhesion prevention: http://www.gbcrs.org/seprafi.html

CO2 laser, Harmonic Scalpel, Electrosurgery, LAP Surgery:ADHESIOLYSIS:
http://www.endogyn.com/en/endogyn-en.htm

ANTI-Adhesion treatment for Gynecologic surgery:
http://www.fda.gov/bbs/topics/ANSWE...1/ANS01117.html

http://www.drdaiter.com/hyst_ecto/hyst3.html

2nd look Lap:
http://www.reproductivecenter.com/m...aparoscopy.html

Does recurrent endometriosis after hysterectomy indicate residual or recurrent disease and what role does HRT choices or ovarian preservation play in the genesis of recurrent pain?
  Quote:
There is no doubt that a proportion of women who undergo radical surgery for endometriosis (hysterectomy with or without removal of the ovaries) are unfortunate to suffer further symptoms which in many cases can be linked to the finding of endometriosis in the pelvis. As a definitive treatment for symptomatic endometriosis it was described in the 1930s. Hysterectomy in the eyes of many should be the last resort of treatment for endometriosis unless there is another valid indication for the operation. It is therefore reserved by many gynaecologists for the most severe cases. Such cases can be technically challenging for the surgeon and it would not surprise me if active disease was left behind at the time of the original surgery. I think it is unlikely that this is recurrent disease, as the sources of endometrial tissue, both within the uterus and from ectopic sites, should have been removed.
http://www.endozone.org/display.asp?...ot-topics/0210
Click on above link to read the entire article...

Causes of Persistence and Growth of Endometriosis~
https://www.hystersisters.com/vb2/sho...hreadid=102449

recurring Endo despite a Hysterectomy:
Endometriosis Conquering The Silent Invader:
http://www.ivf.com/ch17mb.html

Recurring Endo at the Center For Endometriosis Care:
ttp://www.centerforendo.com/news/recurrance/recurrance.htm

Endometriosis-Dr. Stanley West:
http://www.repmed.com/endo.html

Endometriosis Treatment Program @ St. Charles Medical Center-Bend, OR-Dr. David Redwine:
http://www.endometriosistreatment.org/

Hysterectomy & Endometriosis Questionnaire:
http://www.angelfire.com/fl/endohystnhrt/quest.html

Post-Op Ovarian Suppression:
http://www.centerforendo.com/news/o...on/ovarysup.htm

Incisional Endometriosis:
http://www.facs.org/dept/jacs/lead_.../apr00lead.html

Endometriosis Research Center:
http://www.endocenter.org/

Radical Endometriosis Surgery:
http://www.reproductivecenter.com/radical.html

Endometriosis Angels:
http://www.endoangels.com/links.html

Dr Cook's look at Post-Hyst Endo:
  Quote:
This can be one of the most difficult situations encountered with endometriosis. It can be difficult from the patient's standpoint, because, not uncommonly, she is dealing with a medical profession, family etc. who is really starting to question the legitimacy of her pain. From a physician's standpoint, this can be the most difficult type of surgery encountered by a gynecologist and thus the most likely not to be correctly or completely treated resulting in "treatment failure" with recurrence of symptoms.

There is no question that endometriosis can be present in a woman who has undergone a hysterectomy and removal of both ovaries (even more likely if the ovaries remain). Performing a hysterectomy does not in itself treat endometriosis. It may reduce the chance of future recurrence of endometriosis, reduce non-endometriosis related cramps, bleeding etc. The key point is that endometriosis, for the most part, does not grow on the uterus, it grows behind the uterus, on the bowel, in the rectovaginal septum, in the pararectal spaces, under the ovaries, around the ureters, on the bladder, etc. If a hysterectomy is part of the agreed upon treatment plan between you and your physician that is fine, but ONLY AFTER the endometriosis has been completely removed from all of the areas which will not be taken out with the uterus. If you have undergone a hysterectomy alone for the treatment of endometriosis (the endometriosis was not treated just prior to the hysterectomy) there is a good chance you will have persistent or recurrent symptoms. The most common symptoms include constant pain, pain with bowel movements, pain with intercourse (usually deep penetration, like he is hitting something inside) and occasionally mid back pain (secondary to ureteral involvement). You can also experience the emotional changes we have seen with endometriosis including moodiness, depression, etc.

Now, assume for a minute that everyone understands your situation (your doctor, significant other, employer etc.) and your gynecologist surgeon is standing there ready to go after the endometriosis. What are the pitfalls? In my experience, by the time a patient has gotten to this point she has undergone so many surgical procedures that is impossible to tell what is and what is not endometriosis. The anatomy is distorted, fairly extensive scar tissue and fibrosis (tough leathery tissue) is present, and often endometriosis is buried out of sight in a patient who has had a hysterectomy performed. The endometriosis gets buried when the surgeon clamps, cuts and ties the tissue during the hysterectomy. The endometriosis that is present get wadded up and buried in this process. After this area heals following the surgery it can be impossible to see endometriosis without dissecting the areas in which endometriosis is known to grow. Another common area for residual endometriosis is the vaginal cuff. Unless all of the endometriosis is removed from the rectovaginal septum prior to the hysterectomy, it can be easily sewn into the vaginal cuff.

We have seen and treated more than 200 women with residual endometriosis after undergoing a hysterectomy. If you are experiencing this situation, you are not alone. In my experience there are several key factors in successfully treating this type of case. First, this is probably the most technically challenging surgery a gynecologist will face. It is important to seek out a surgeon who is technically good and has experience in dealing with this situation. Second, since it can be impossible to determine what is and what is not endometriosis, all abnormal tissue must be removed and the areas in the pelvis where endometriosis is know to grow must be dissected out. It is not uncommon for an area to look normal on the surface, but to have deep endometriosis when opened up. In my experience, all areas need to be dissected down to normal tissue (endometriosis until proven normal). Depending on the specific situation a small portion of the vaginal cuff may need to be resected.

In summary, you can have endometriosis and the associated symptoms and pain even if you have had a hysterectomy. Treatment of this condition is technically challenging and requires the ability, expertise, and equipment to dissect and laser all of the pelvic areas deep down to normal tissue. In my opinion, a surgeon can not get all of the endometriosis and scar tissue by just spot treating or selectively excising lesions. In my experience, once all of the pelvic area is explored and all the abnormal tissue is laser out, the patient feels better.

Women with Stage III or IV endometriosis often have the ovaries stuck to the pelvic sidewall (with adhesions) and endometriomas in the uterus. When the ovary is removed a portion can be left behind, looking like scar tissue attached to the underlying blood vessel. The surgeon will often not clean the "scar tissue" off of the blood vessel thinking that it is not causing the patient any harm and not worth the "risk" of operating that close to the blood vessel. If the endometrioma and cysts or on the left side this is probably the cause of your pain. If you had stage III or IV endometriosis it is very possible that you could have endometriosis on your bowel (most common site of "recurrence" after a hysterectomy), bladder or vaginal cuff. Operating on women with endometriosis who have had a hysterectomy can be very different than that on a woman that is undergoing her first laparoscope. You need to find a surgeon who is experience in dealing with this type of situation.

If the endometriosis is not removed from the vaginal cuff and area behind the vagina just before removing the uterus, the patient is at a high risk of having persistent growth of the endometriosis and symptoms such as bleeding and pain with intercourse. If this is endometriosis, it probably in the space between the vagina and the rectum. It may also be in other areas of the pelvis. A thorough laparoscopic examination will determine if this is the case. Also the very top of the vagina may need to be removed to excise all of the endometriosis. This is not a problem from a sexual functioning standpoint.

http://www.pelvicpain.com/askdoctor_QA.html#endorec
  Quote:
Hysterectomy and ovariectomy(BSO) are not always curative of the symptoms of endometriosis, and because that surgery does not remove all of the endometriosis implants in the pelvis. Perhaps more was done than you are aware of in an attempt to remove the implants, or perhaps they have grown back from the microscopic disease that couldn't be seen by your surgeon. Or perhaps other pain syndromes, such as interstitial cystitis, or hyperactive bowel syndrome are the cause of the pain. Another variable is body weight, because a heavy person makes more estrogen than does a thin person, and perhaps this factor, if present, is adding to the estrogen-induced symptoms. The other hormone of importance is progesterone which obliterates endometriosis. An alternative to stopping the estrogen would have been to continue it along with norethindrone, a synthetic progestin, in a patch product called Combipatch by Rhone-Ponolac-Rhorer. Or this could have been done orally with Searle's Lo-estrin 1/20, taken every day. Another approach would be to administer Depo-Provera by IM injection monthly, or Provera orally at 30mg daily, with or without estrogen. Even Danazol, 400mg daily would probably have reduced the symptoms. All of these medical treatments take 8-12 weeks before the benefit can be evaluated-it's a slow process, killing the endometriosis.
http://www.stanford.edu/group/whpu/qa/07,09,99.html
I hope this was of some help....I'm sure the other w/ personal experience/advice will be along shortly to share...pls keep u posted....((((hugs))))
  #3  
Unread 08-07-2003, 10:00 PM
Sheri

Thank you so much for your post. There is alot of really good information, and I am going to go through the websites also tomorrow.
I feel alot better about a few things after reading that.
I recently have taken medical leave from work because I just double over from the pain and am unable to eat without feeling or getting sick, I just feel HORRIBLE.
I've gone through the testing and nothing has been found, been told I seem pretty healthy, really no reason I should be sick or in pain.
Amazing how someone saying that to you can make you feel uncomfortable and like you have to defend your pain.
I don't like people doubting me, especially when it comes to my health.
On top of being in pain physically, mentally, I feel like I have to deal with people just not understanding.
I'm sure you have been in a situation, or know of one, where someone says they're sick and the minute the sickness is gynecologic, it's like "Oh, you're not really sick, it's JUST female problems." Fortunately my family has not been unsupportive at all, they know this is quite painful. Also my Doctors have been kind, but when they can't diagnose something definitively it seems easier to say maybe it's nothing.
I did not have my hyster because of endo, I didn't stop bleeding for 4 months no matter what the Drs did. I was okay with the decision since I was told not to have any more children because my pregnancies were very difficult and led to preterm labor both times. My last one was unbelievably bad and my Dr. said my uterus was just barely able to carry a child and the next one would not be viable, so not having any more children was already something I had to deal with and was okay with it. I did however feel very lucky that I wouldn't have to deal with all of the pain anymore, little did I know. But knowledge is power.
I feel fortunate that I got away from the pain for very close to 10 years.
I can't tell you just how much it means to me that you put so much information into your post for me and others who may find themselves in a similar situation. I'm grateful and I have said a special prayer for you. It's a wonderful world we live in when we can count on people we don't even know to help when we're in need.
I will post updates when I find out more, until then I'll follow your leads and learn more about what I can do to help my Dr. get me healthy.
Thank You Again,
FosterKat
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  #4  
Unread 08-08-2003, 08:30 AM
Endometrosis after hysterectomy

  Quote:
I've gone through the testing and nothing has been found, been told I seem pretty healthy, really no reason I should be sick or in pain.
(((FosterKat))),
Unfortunately, there are several of us here that have had similiar comments made At one point I really started thinking it just might be in my head That's sad that a Dr, the one person that is supposed to HELP you makes you feel that way. I've been to soo many Drs it's unreal. I sought out Surgeons, Gyns, Rheumatologist, Neurologists, PCP's, Internal Med. & finally found someone to help from the ones I fought seeing the most Pain Mgmt Drs my Pain Dr has given me a part of my life back I thot was gone forever...I still have pain but it's not soo severe that I'm doubled up in bed most of the day. I can function w/o the pain being my foremost thots...I still have bad days but now there are good too I have a few close friends, a few who post here that see Pain Drs for pain from recurring Endo Post-Hyst. Another hasnt had a Hyst, she wanted one but I begged her to try other therapies/treatments first, she is a Pain patient & is being treated for pain from her Endo & Adhesions. Endo is a disease & is recognized as a disability...
Here are some more sites discussing pain, left untreated pain itself can take a huge toll on our Physical & emotional well-being..there are several Advocates out there fighting for better methods of pain relief & that not appropiately treating it can carry consequences. There is a bill in the house now that some are tying to get passed!!

CHronic Pain & getting relief:
http://www.paintechnology.com/[/url]
http://www.familydoctor.org/handouts/551.html
http://www.pain.com
http://www.obgyn.net/cpp/cpp.asp?pa...TE_1102#Chronic
Chronic Pain Medicines:
http://www.familydoctor.org/handouts/122.html

CPP~Symptom checklist:
http://www.obgyn.net/cpp/_carter/image3.htm

Monthly Pain Calendar:
http://www.obgyn.net/cpp/_carter/image4.htm

Pain questionaire:
http://www.obgyn.net/cpp/_carter/image1.htm

Pain Mgmt Drs & Clinics
http://www.pelvicpain.org/communication.ppt
http://www.pelvicpain.org/pdf/diagnosis_management.pdf
http://www.obgyn.net/english/pubs/f...20Pelvic%20Pain
http://www.theacpa.org/
http://www.pain.com/drfiles/cfdradv...Article_id=7007
http://www.pain.com/painclinics
http://painlinks.org/
http://www.painfoundation.org/page....ge_links.htm#26
http://www.painfoundation.org/page....ge_links.htm#28
http://health.discovery.com/centers/pain/pain.html
http://www.obgyn.net/cpp/cpp.asp?pa...cpp_perloe_0599
http://cgi.search123.com/cgi-bin/af...RY=chronic+pain
http://www.familydoctor.org/handouts/260.html
http://www.familydoctor.org/handouts/033.html
http://www.gynsecondopinion.com/pelvic-pain.htm

Pain: The Controversy Surrounding Chronic Pain and Opioids: http://www.fibromyalgiasupport.com/...cle.cfm/id/4073[/url]

Nerve damage after surgery:
http://neuro-www.mgh.harvard.edu/fo...ervedamage.html

Pain and the Law:
http://www.painfoundation.org/page.a...e_links.htm#35

Promoting Pain Relief and PreventingAbuse of Pain Medications:A Critical Balance:

http://www.painfoundation.org/page.a...=page_news.htm

National Foundation for the Treatment of Pain:
http://www.paincare.org/index.html

State Medical Boards: Opioid Therapy Guidelines:
http://painlinks.org/guidelines.html#ppsg

PAIN: The Fifth Vital Sign:
http://www.ampainsoc.org/advocacy/fifth.htm

Partners Against Pain:
http://www.partnersagainstpain.com/

JCAHO Pain Management Initiative & The American Pain Society:
http://painlinks.org/jcaho.html

New pain standards:A giant opportunity to change patterns of care in the US:
www.whocancerpain.wisc.edu/

"Pain Undertreatment: "A Strikingly Large Problem":
http://www.lastacts.org/files/public...te2.htm#INSIDE

Purdue Launches New Web Site: Painfully Obvious:
http://www.painfullyobvious.com/

TIME Magazine: THE CASE FOR MORPHINE:
http://www.time.com/time/magazine/19..._case_for.html

Chronic Pain In America: Roadblocks To Relief:
http://www.ampainsoc.org/whatsnew/toc_road.htm

Pain Management Classes for Doctors:
http://www.partnersagainstpain.com/h...re.htm?pg=7446

American Chronic Pain Association: Partners for Understanding
Pain:

http://www.theacpa.org/pain_awarness.htm

Chronic Pain Info & Organizations:
http://painlinks.org/chronicpain.html

Pain & Related Medicines:
http://painlinks.org/meds.html

Pain Links:
http://painlinks.org/

Pain Management and Information Organizations:
http://www.painfoundation.org/page.a...e_links.htm#26

Risk Of Addiction To Pain Relief Is Small,Expert Says:
http://www.docguide.com/dg.nsf/DGNew...enDocument&f=y

Surgical Treatment for Chronic Pelvic Pain

https://www.hystersisters.com/vb2/sho...ic+Pelvic+Pain

https://www.hystersisters.com/vb2/sho...ic+Pelvic+Pain


Endometriosis~list of things to know....
TEN THINGS I WISH I’D KNOWN
By Ellen T Johnson


  Quote:
  • There is no cure for endometriosis There is no cure for endometriosis
  • For many women, endometriosis is a disease you have to learn to “manage”
  • Surgery and drugs are not always the answer
  • Adhesions will likely form as a result of surgery which may be more painful than endo
  • Recovery from surgery is often difficult and takes longer than you expect or are told
  • Depression can be a very real part of this disease
  • Doctors don't always have the answers
  • There aren’t many doctors who know enough about endo to understand it and treat it
  • Even if they try, other people cannot understand what you are going through unless they have painful endometriosis
  • There are support groups out there that can help
http://www.endozone.org/display.asp...0304_ten-things
Here are some threads from other (((Sister))) I thot might be helpful as they are suffering similiar situations:

*hyster for Endo relief, does it work*
https://www.hystersisters.com/vb2/sho...highlight=ENDO

*I need advice on recurrent ovarian cysts and lupron
https://www.hystersisters.com/vb2/sho...highlight=ENDO

*new to board, tried it all, at wit's end --
https://www.hystersisters.com/vb2/sho...highlight=ENDO

I didnt mean to give you another *book* to read There is just soo very much out there that needs to be known....((((hugs))))
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