Frozen Pelvis is the most extensive form of advanced endometriosis, encompassing the ultimate forms of deeply infiltrative endometriosis (DIE). This aggressive form of the disease is inclusive of all extreme endometriosis presentations plus unusual deep infiltrative attachments to outer limits of pelvic ligaments, nerves, and muscle tissues. Frozen pelvis can be partial or total. Frozen pelvis is synonymous with "End Stage Endometriosis" or "Terminal Endometriosis" in the pelvis.
When frozen pelvis occurs, deep fibrotic nodules and deeply infiltrative endometriosis replace pelvic soft tissues with high-density fibrosis. Pelvic organs soon become firmly fixed to pelvic bones, making them immobile or “frozen,” comparable to the way ice feels.
Although endometrial tissue can implant and invade any tissue of the body, most frequently it is found in the peritoneal cavity of the pelvis. The peritoneum is the thin membrane that covers the uterus, ovaries, bladder, ureters, pelvic sidewalls, and bowel. Endometrial implants are a tissue similar to the tissue that lines the inside of the uterus and is therefore affected by and subjected to a similar reaction as estrogen and progesterone fluctuations, which is to bleed. In other words, mini-menstruations occur at these implantation sites upon hormonal changes that normally cause a woman to have a period. Unlike a period, however, the menstrual blood shed from these lesions becomes trapped in the peritoneal lining. The immune system then commences a “fight” to clear this debris that results from menstrual shedding of the lesions. The resulting struggle causes inflammation at the cellular level. Gradually, increased scarring, also known as adhesions, take place. These adhesions can “glue” internal organs together, wrap around organs, form web-like structures from organ to organ, or attach to the lining of the abdomen. When a surgeon visualizes the peritoneal cavity and sees adhesions stretching from the ovary to the tubes, the pelvic sidewalls, and the cul-de-sac, they will understand that these signs may indicate a more serious problem. These adhesions may extend to deeper tissues, involving the nerves, lymph nodes, and/or muscle layers of organs. After the adhesions dig deeper, they harden the soft tissues and organs in the pelvis, and what started as an early peritoneal implant becomes a total rock-like tissue due to fibrosis.
Frozen pelvis is different than Stage 4 endometriosis and Stage 4 adhesions. While most stages of endometriosis are based on a view of the pelvis during surgery with laparoscopy, a pelvic examination by an experienced endometriosis surgeon can easily diagnose frozen pelvis. In other words, while frozen pelvis is a term more commonly used in an initial clinical setting, stage 4 endometriosis can only be formally diagnosed after surgical treatment.
During a pelvic examination, the doctor feels for a firmly fixed uterus. Sometimes the tissues that are frozen in fibrosis involve nerves and blood vessels both in the front and back of the uterus with no mobility at all. As the doctor performs a vaginal examination, a patient with frozen pelvis can feel extreme pain because their pelvic organs have lost all flexibility. This process causes what we call a “frozen” pelvis as the organs no longer move freely or easily within the normal confines of their organic structures. This, in turn, causes pain and discomfort due to the nature of the adhesions pulling on other organs. Usual functions such as a bowel movement, emptying the bladder, menstruation, and sex are extremely painful due to the restrictive nature of scarring and altered anatomy. Bowel obstruction, kidney swelling (hydronephrosis), ureter swelling (hydroureter), bladder dysfunction, and the involvement of pelvic nerves are frequently due to partial or incomplete frozen pelvis.
Severe leg pain can be experienced during and around a patient’s period, and pain radiating on the course of the sciatic and pudendal nerves is common. Patients with frozen pelvis sometimes cannot cross their legs due to deep tissue infiltrated with endometriosis at the pelvic sidewall or cannot sit due to tailbone involvement. Most patients with frozen pelvis complain of severe changes in bowel habits possibly caused by obstruction, including constipation with episodes of diarrhea, painful bowel movements, and a gassy and bloated feeling. Patients also experience frequent urination (even at night), difficulty holding urine due to decreased bladder capacity, and flank pain caused by an obstructed and dilated ureter. These are all very well known and recognized symptoms. Most patients at this stage of endometriosis have also stopped having sexual intercourse because of disease involvement in the upper part of the vagina. This causes sex to become incredibly painful during and around the time of a patient’s period. It is also common for pain after sex to continue for several days. Most of these symptoms present together in frozen pelvis cases.
Pelvic examination in the office must immediately be followed by an endovaginal sonogram. The purpose of an endovaginal sonogram is to rule out the involvement of the uterus or presence of an endometrioma and confirm findings of bimanual examination. Due to the fact that pelvic examination is extremely painful, the doctor performs a very gentle evaluation at this stage. A recto-vaginal examination is the last part of the evaluation to check for nodules in the rectum and upper vagina. After a thorough examination, the next step is to obtain an MRI of the pelvis with contrast to see the depth of involvement and status of the kidney and its outlets, the ureters, and the bladder.
Surgery for frozen pelvis is performed using minimally invasive techniques, also known as advanced laparoscopy. All team members are very experienced surgeons who have mastered their specialty. Each performs their part in the surgery. The urologist performs the cystoscopy and stent application into the ureters. The entire procedure is performed through tiny instruments entering small incisions while the image of the surgery is transmitted to a high definition video screen. This screen is larger than the actual operative field and allows additional zooming-in of the camera. This allows the endometriosis excision surgeon to perform excision with the ultimate precision needed to remove endometriosis scar tissue. A surgeon must flawlessly suture both extracorporeally and intracorporeally with precision and speed. In addition to experience with the disease, the skill of the lead surgeon and his or her hand and eye coordination, as well as perseverance, has a direct role in ensuring the precise and complete excision of the deep nodules. An expert endometriosis excision surgeon with experience and skill is imperative in order to treat the extreme condition of frozen pelvis. This team should also have a urologist, colorectal surgeon, and vascular surgeon on call, all of who are advanced laparoscopic pelvic surgeons as well.
Frozen pelvis surgery may last up 6 hours and mostly consists of the wide excision of the nodular and infiltrative endometriosis involving the bowel, rectum, and sigmoid colon. Bowel resection, discoid excision, and shaving of lesions with nodulectomy are all possible surgical procedures that may be needed. The bladder, the ureters on both sides, and the parametrium of the vaginal walls are always affected in the frozen pelvis, and thus surgery will involve these anatomical locations.
Surgery may be performed by laparotomy (open abdomen), or minimally invasive surgery, also known as laparoscopic surgery. Rather than a large skin incision over the bikini line or from the belly button to the pubic hair, our preference is the laparoscopic approach where incisions are very small and almost invisible. Altogether there are only four incisions, and most of them are only one-fifth of an inch (5 mm). If added together, these tiny incisions would total the length of 2.5 centimeters (exactly one inch)! The surgeon then advances from surrounding healthy tissue to contain and encircle the fibrotic tissue. When the ureters are safely located, open anatomic spaces around the bladder and bowels are used to advance to deeper tissues. Eventually, removal of the disease involves the partial removal of the rectum, bladder, ureter, and significant volumes of nodular fibrotic tissue attached firmly to muscle, fascia, ligaments, arteries, veins and lastly, nerves. The ultimate principles of microsurgical techniques need to be utilized due to proximity and involvement of the ureters and nerves, particularly the ischial nerve and parametrial retroperitoneal deep tissues, which are all key for nerve function.
Frozen pelvis is one of the most extreme cases of endometriosis. Because it is a rare occurrence and the endometriosis scarring is so extensive, many physicians have trouble treating frozen pelvis due to endometriosis. We have learned that in these cases, it is crucial to listen to all symptoms a patient may present, as these can be key indicators as to where endometriosis scar tissue may lie. As long and intensive as frozen pelvis surgery may be, we stress the importance of removing as much endometriosis scar tissue as possible. Frozen pelvis can cause a great deal of pain in a patient’s day to day life, but there is no reason that you should be fighting this battle alone.
Medically reviewed by Tamer Seckin, MD on October 20, 2019
I’ve seen many obgyns over the years explaining my monthly symptoms during my period...but eventually it became a daily struggle with these pain. It feels like a poke here and there near my right pelvic region. I was given birth control pills for the past ten years but honestly, it didn’t help at all. I was in bed whenever I had my period. I was previously sent to GI doctors for possible appendicitis but it was ruled out from imagings…
Dr.Seckin is so much more than a surgeon. His passion for helping endometriosis sufferers and determination to improve the quality of life in all of his patients is undeniable. I remember when my gynecologist first told me I needed a laparoscopy. Her exact words were "I can do the surgery, but if you were MY daughter- I'd send you to him." From the first day I met him he took the time to explain endometriosis to me since I knew…
I was there for hysterectomy but then I found out that I also had endometriosis.My both surgeries went excellent and I feel great!.I am so thankful to Dr.Seckin and all his team for making my journey smooth!
I am a physician who suffered from deep infiltrative endometriosis. I needed laparoscopic surgery, so I went to see my former gynaecologist and he performed the procedure (a surgery which he supposedly does hundreds of times a year) last November. I had severe pain again when I had my period in January and was advised to go on taking a low hormone dose anticoncipient pill. My symptoms came back quickly and got worse in a few months’ time. I went…
After years of excessively painful periods, a serious loss of quality of life, and a series of uninformed and uninterested doctors, Dr. Seckin and Dr. Goldstein turned my life around. I was told I woke up from my surgery almost a year ago with a smile on my face, and I haven't stopped since. Before I heard of Dr. Seckin, I was experiencing almost daily terrible pain to the point where I had difficulty walking, inability to eat, inexplicable weight…
Dr Seckin and his team gave me back my life! Tomorrow will be 1 month since my surgery and I feel great. Dr. Seckin, Dr Liu, and Dr Goldstein are not only beyond words talented and amazing Doctors, but they are also genuinely wonderful and caring people. I cannot say enough great things about Holly, Asiye and Kim as well. They were all caring, kind, patient, and took the time to listen to me and explain anything I needed to…
Dr. Seckin and his staff spared me from years and years of heavy periods and unbearable endometriosis pain. After having surgery with him (my first) I can now function like a regular human. No more eating NSAIDs like candy and calling out sick from work. Thank you, Dr. Seckin!