Endometriosis

Endometriosis develops when endometrial-like mucosal cells normally found in the endometrial lining of the uterus begin growing and functioning in other areas or organs of the body. Under the microscope, endometriosis almost always contains the glands and stroma of normal endometrial cells found in the uterus, but it has other features that are very different; that’s why its cells are described as similar to or endometrial-like.

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How does endometriosis occur?

Despite microscopic differences, endometriotic growths can respond to the monthly fluctuations of female sex hormones, just as normal uterine endometrial cells do in reproductive-aged women and girls. Because of this, endometriosis growths can bleed, shed, and proliferate in concert with a woman’s monthly menstrual and/or ovulatory cycle. This is why the pain usually becomes most acute around menstruation and/or ovulation.

In the broadest terms, many researchers hypothesize that the body’s immune system recognizes that these endometriotic growths are not growing where they should and therefore launches an immune response in order to destroy them. (Others believe that the immune system does not recognize them until it’s too late). As a result of this continued battle between endometriosis and your body’s immune system, the cytokine-prostaglandin response, inflammation, and other immune system factors appear to become chronically dysregulated.

It’s a classic vicious cycle. Partially as a result of this immune response and other factors, severe pain with menstruation, chronic pain independent of menstruation, inflammation, subfertility, infertility, tissue necrosis, and scar tissue (adhesions) can develop. In severe cases, endometriosis causes such extensive damage that serious complications ensue, like life-threatening bowel obstruction, bladder dysregulation, kidney dysfunction, silent loss of kidney (Ureteral endometriosis), collapsed lungs, and destruction of the ovaries and fallopian tubes. Meanwhile, scar tissue formation also damages organs by encasing them together in abnormal ways -in a sense strangling them – which, in severe cases, leads to the so-called frozen pelvis which can cause chronic pain and even loss of organ function. Like the rogue agents that they are, it appears that these clever little endometriotic growths can also reprogram genetic pathways, allowing them to continue migrating throughout the body and even produce their own hormones, nerves, and blood supply. It’s as if endometriosis is determined to live and will do anything to ensure its own survival. In this sense, endometriosis behaves in similar ways as cancer, even though it’s classified as a benign condition. (Endometriosis is, however, associated with an increased risk of certain cancers). A combination of genetic predisposition, epigenetic mutations, stem cell dysregulation, immune system dysfunction, and environmental triggers have all been proposed as potential factors in the pathogenesis of endometriosis. Through all of these potential pathways, endometriosis can be a progressive disease; that is, it can continue to grow throughout the body and become worse, despite medical and/or surgical interventions and even if the uterus and ovaries have been surgically removed.

Where does Endometriosis grow?

Endometriosis has been found in every organ and anatomical structure in the body except the spleen. However, the lower abdominal cavity (pelvic cavity) is the most common general area where endometriosis occurs, and the most common cites include the peritoneum (lining of the pelvic area), rectouterine pouch (also called the Pouch of Douglas or or cul-de-sac), rectovaginal septum, rectovaginal septum, uterosacral ligaments, ovaries, fallopian tubes, all over the outside of the uterus, including underneath it and behind it, the appendix, bowel, bladder, and rectum. Meanwhile, adenomyosis, thought to be at least a cousin of endometriosis, if not simply another form of the disorder, occurs inside of the uterus, with the endometrial-like cells growing into the muscular wall of the uterus instead of outside of the uterus, like endometriosis does.

While less common, endometriosis can also grow in other areas, including on blood vessels, the cervix, diaphragm, lungs, nerves, ureters, vagina, and inside of cesarean or other surgical scars.

Rare cases of endometriosis
Although exceedingly rare, endometriosis can even invade other vital organs and structures such as the kidneys, the eyes, liver, pancreas, brain, bone, heart, skin, and nasal cavity.

What the symptoms of Endometriosis?

Although symptoms can vary considerably, the most common are:

extremely painful periods
pain just before or after your period
pelvic pain at any time during the month
pain during or after sexual intercourse
difficulty getting pregnant (infertility)
nausea and vomiting
severe abdominal bloating
pain during ovulation
pain or bleeding with bowel movements
other bowel symptoms (ie, pain with bowel movements/ constipation/ diarrhea intestinal pain/upset stomach)
other bowel/gastrointestinal symptoms (acid reflux, loss of appetite, nausea with eating)
pain or bleeding with urination
other bladder symptoms (difficulty voiding/urgency/frequent urination/ incontinence)
pain in the lower back
pain in the groin area
heavy periods
more frequent periods
other, irregular bleeding
fainting/falling unconscious (due to pain)
pain that mimics appendicitis
pain that mimics celiac disease
pain that mimics Crohn’s Disease and/or irritable bowel syndrome
pain that mimics interstitial cystitis
fatigue

What are the risk factors for Endometriosis?

A woman who has a mother or sister with endometriosis is much more likely to develop endometriosis than other women.

You are also more likely to have endometriosis if you:

Started your period at a young age
Never had children
Have frequent periods or ones that last 7 or more days
Have a closed or otherwise blocked hymen (imperforate hymen, congenital aplasia), which blocks the flow of menstrual blood out of your body during menstruation (also called Mayer-Rokitansky-Kster-Hauser (MRKH) syndrome)
Have other uterine abnormalities such as a double uterus, septate uterus, or bicornuate uterus
Have fibroids

Why Endometriosis is so painful?

Unlike normal endometrial cells found in the lining of the uterus, these errant endometriotic growths do not get expelled from your body each month as a period. Instead, they implant and begin reacting to the monthly hormones that trigger menstruation, causing them to bleed and shed and grow, month after month and year after year if left untreated. Although these endometriotic growths are benign (not cancer), it appears that the body still recognizes that they shouldn’t be growing outside of the uterus, and therefore usually launches an inflammatory response in order to try to destroy them. As a result, the affected areas become extremely inflamed and therefore potentially extremely painful. This chronic pro-inflammatory environment eventually leads to elevated cytokine-prostaglandin levels which contribute to the chronic pain. Blood and pus-filled endometriotic cysts may also form, which can become twisted (called torsion) and/or burst open and cause still more pain, bleeding, infection, and another cascade of acute inflammatory responses. Endometriosis can also grow directly onto nerves, which can cause excruciating pain, similar to the way that the nerve-invading disorder shingles does.

As mentioned, it also appears that endometriotic growths can generate their own supply of blood vessels and nerves, which increases the number of pain receptors and therefore contributes to heightened pain responses. Eventually, scar tissue and other symptoms of endometriosis develop. In fact, scar tissue itself can cause severe pain. For example, in cases when endometriosis has invaded the ureters, scar tissue can cause these organs to close up (constrict), which can lead to severe kidney infections and an inability to completely void when urinating. Bowel endometriosis, on the other hand, can cause severe bowel obstructions and/or tiny perforations (holes), allowing the contents of the bowel to leak out into the pelvic cavity, which can cause an extremely painful, life-threatening medical emergency. In severe cases endometriosis can even completely destroy organs. For example, while most know that endometriosis can totally destroy the ovaries, in rare cases some women have even lost a kidney due to this confounding disorder.

Can Endometriosis be cured?

There is no cure for endometriosis but a combination of medical and surgical treatment can significant improve the symptoms. Surgical treatment helps to remove all the visible disease while the medical treatment can help to reduce the recurrence and keep the symptoms away.

Some have claimed that endometriosis can be cured by a thorough excision surgery or by pregnancy or hysterectomy or medicines or life style changes. As much as we wish there were a cure, unfortunately, these claims are absolutely untrue. Surgery does not cure endometriosis; lasers do not cure endometiosis; pregnancy does not cure endometriosis; hysterectomy does not cure endometriosis; menopause does not cure endometriosis; birth control pills do not cure endometriosis; dietary changes do not cure endometriosis. There is no cure for endometriosis. The myth that excision surgery by an excision expert can cure endometriosis has persisted because some women do indeed experience a remission of symptoms after one particular surgery, or after a few surgeries that didn’t appear to help, followed by one last surgery, which did. At first glance, this would make it seem as if endometriosis is curable if only one could just get the right surgery. However, there are other women who have a more recalcitrant form of endometriosis, as well as other factors, who, despite having the exact same surgery by the exact same surgeon still experience recurrent endometriosis.

In short, extrapolating the experience of one patient to that of an entire population produces misleading conclusions because women have unique genetic, endocrinologic, and environmental modulators, as well as different forms of endometriosis that vary widely in symptoms and recurrence patterns. Patients with severe, stage IV endometriosis, for example, often have higher recurrence rates than those with less severe disease (stage I-II).

However, what is true is that surgeons have varying degrees of skill and experience, which definitely does make a difference. In fact, as dozens of studies have repeatedly found, the two main factors correlated with successful surgical outcomes are the skill and experience of the surgeon. It is for this reason that women with endometriosis are urged to seek care from an endometriosis specialist.

Diagnosis

Endometriosis is a very difficult condition to diagnose and thus occasionally it can take a long time for patients to be referred to hospital specialists. Many patients will suffer with pelvic pain for over 6 years before the required tests are carried out.

Mr Amer Raza has a carefully planned series of investigations and assessments available to diagnose the extent of endometriosis and these can be carried out in a timely fashion without delay.

Some of these tests are summarized below. The order of these tests may vary with every patient, and you may not require every test performing.

History taking and examination A full and thorough history will be taken to understand the extent and type of disease process. This is the most important part of the assessment. This will be followed by a gentle examination, including a pelvic assessment and possibly speculum to palpate any endometriotic nodules, bowel adhesions or masses.

Pelvic ultrasound scan

Mr Raza carries out all the ultrasounds himself. This is an additional tool along with the examination to get the accurate diagnosis. The ultrasound scan is a very good tool to help with the ovarian endometriosis, tenderness and adhesions. The patients gets the instantaneous explanation of any finding and linking these the symptoms such as painful periods, painful intercourse, chronic pain and irregular bleeding pattern.

The ultrasound scan also helps to check the follicular count from a fertility perspective.

MRI

If there is an evidence of severe endometriosis with involvement of bowel, then a pelvic MRI scan is arranged within days to map out the disease and plan a surgical treatment. The pelvic MRI gives a very detailed information about the extent of the disease and involvement of other organs. His is also the best investigation to look in to adenomyosis. Dr Iola Papanikolaou is the consultant radiologist with a special interest in endometriosis. She reports all the MRI scans.

Expanded investigations

Colonoscopy and flexible Sigmoidoscopy

Performed by Mr. Oliver Warren, this may become necessary in severe cases of endometriosis where the colon and rectum can become involved in the disease.

This may become necessary in severe cases of endometriosis involving the large and small bowel, particularly where the rectum becomes stuck to the back of uterus. Mr Oliver Warren, a laparoscopic colorectal surgeon with an interest in endometriosis surgery will carry out the procedure. These investigations help us to understand the extent of bowel involvement and perform pre-operative planning and where necessary a detailed consent process. Mr Raza and Mr Warren work very closely in these complex cases of rectovaginal endometriosis to achieve the best results for their patients, and are happy to perform joint consultations with patients and their families prior to surgery.

Treatment

Endometriosis and pelvic pain are commonly misunderstood and mistreated. Successful treatment of endometriosis and pelvic pain requires addressing several essential issues in two basic categories; (1) correctly performed surgical removal of the endometriosis implants and (2) treatment of co-conditions and/or underlying conditions often associated with endometriosis. Unfortunately many patients with endometriosis are not having either of these areas treated correctly. There is a lot of un-necessary pain and suffering as a result of the inadequate diagnosis and treatment of endometriosis.

Currently, the standard approach used by the majority of general OB/GYN’s for surgical treatment of endometriosis is ineffective and out of date. coagulation or burning of endometriotic lesions is the most common surgical approach, which results in only a partial destruction of the disease. The remaining disease not removed at surgery continues to grow with return of symptoms quickly (months to a year or two). In contrast,Wide excision of Endometriotic implants used by Mr Raza. This technique ensures the excision of all endometriotic lesions at the margins of normal tissue. The inadequate surgery often results in patients undergoing multiple ineffective surgeries. There is no medical cure for endometriosis. It must be completely removed surgically with true wide excision.

It is well documented in the scientific literature that endometriosis specialists have higher success rates and lower recurrence rates compared to general Gynaecologists This should not be surprising. The concept of better outcomes with medical specialties and subspecialties is the basis of the current medical training and certification system with a variety of different medical subspecialties. Most nationally recognized endometriosis surgeons provide excellent treatment with wide excision. This is an important first step, but it is not the complete picture.

The second basic part of treating endometriosis and pelvic pain is that of treatment of co-conditions and even underlying conditions associated with endometriosis. This does not refer to pharmaceutical medical treatment, rather treatment of what is known as chronic inflammatory disease. The best approach to these conditions is integrative or functional medicine. The objective of this approach is truly becoming healthy. Surgery can remove disease but it cannot make a person healthy. The disease effects number of organs such as bowel, bladder, nerves (neuropathic pain), infertility and psychosexual feelings. Any treatment should look at all aspects of this disease to help in its entirety. Endometriosis centre has put the best team together to address all issues. It is often impossible for endo patients to recover their health without addressing these issues.

Our philosophy at Endometriosis centre is not just treating symptoms, but one of truly removing the disease and restoring a person’s health. We do not want you to live with endometriosis, we want you to heal from the disease and move on with your life. We want endometriosis to be a something in your past. This is why we have a whole integrative component as part of our endometriosis treatment program. We offer the most comprehensive approach to treating all aspects of your endometriosis and pelvic pain. Combining laparoscopic wide excision surgery with a holistic functional medicine approach to look at the whole body and treat underlying imbalances provides the best approach to the treatment of endometriosis and pelvic pain.

Endometriosis can present itself in a range of forms from a milder state to very severe rectovaginal disease. The treatment is very much designed based on the symptoms, findings and patients choices.
There is no fixed way to treat this so following is a brief version of various treatment options.

Medical treatment

The medical treatment can be used and justified in few instances.One of its role is in the Pre-surgical treatment of ovarian endometrioma. The Hormonal treatment can help to reduce the size of endometrioma which reduces the surgical harm to the ovaries. The Hormonal medical treatment is also justified after the operation to stop the periods so to allow more time for the excision wounds to heal. Third indication id for those patients who want to delay operation or have quite mild disease hence prefer to have medical treatment.
Mr Raza will have detailed discussion about the pros and cons of this treatment to formulate a final plan of care. There is lot of research being carried out to use various other drugs but none of them have been the answer for this problem.

Surgical treatment

Laparoscopic removal of endometrial implants remains the key part of management. The critical part of this approach remains the complete removal of endometriosis from the peritoneal cavity, ovaries, bowel and bladder. The endometriosis can lead to adherence of various structures in the abdomen. Most symptoms are secondary to this adhesive disease. The peritoneal involvement of endometriosis leads to pelvic pains and period pains. If endometriosis involved the bowel, then painful defecation, irritable bowel and bloating are the main symptoms. The bladder endometriosis leads to painful urination along with increased urine frequency. There could be number of other organ involvement giving rising to relevant symptoms. The treatment options will be to remove this adhesive disease in its entirety to have the symptoms relief.

If the endometriosis is of severe nature, then multidisciplinary approach is adopted involving all the specialities such as colorectal surgeon, urologist to make a final plan of care.

The endometriosis also effect fertility by its adhesive nature and effecting the fallopian tibes and ovaries. Surgery helps to restore the normal anatomy hence helping with functionality .

A thorough excisional technique helps to remove the visible and adjacent invisible (microscopic) endometriosis. This is the most effective approach to treat this problem.

My surgical team

Mr Amer Raza

Consultant Gynaecologist – Laparoscopic surgeon with expertise in Endometriosis
Mr Raza is an experienced and accomplished laparoscopic surgeon. He is a substantive consultant in Chelsea and Westminster hospital with his specialist interest in extensive and complex endometriosis. Chelsea and Westminster Hospital is one of the largest endometriosis centre in UK and receives national and international referrals.

Mr Raza has expertise in the treatment of all forms of endometriosis including peritoneal endometriosis, ovarian endometrioma and rectovaginal disease. He has developed a multidisciplinary approach to severe endometriosis given the multisystem involvement of this problem. His team consists of experts in colorectal surgery, urology, fertility and complimentary therapies such as acupuncture. He has frequently presented in national and international meetings and focuses his research in pelvic pain, endometriosis, laparoscopic surgery and hysteroscopic surgery.

Mr Raza is also cofounder and director of Chelsea centre of minimal invasive gynaecology surgery (www.ccmig.co.uk) which is one of the busiest laparoscopic training courses in London. He also extended these laparoscopic training courses to other countries such as Pakistan and Iraq.

Mr Raza is participating in number of research projects including pelvic pain, fibroids management and endometriosis. He has published in many international journals on endometriosis, pelvic pain, safety of laparoscopic surgery and heavy periods.

The philosophy of his care is to provide every patient with a personalized and excellent care. Gynaecological problems such as endometriosis can be worrisome and stressful. Mr Raza believes in an open, empathetic and holistic approach for the management of gynaecological problems.

Mr Oliver Warren

Consultant Colorectal surgeon with special expertise in laparoscopic colon surgery
Mr Oliver Warren is a consultant colorectal, intestinal and hernia surgeon who qualified from Imperial College London in 2001. He gained his Doctorate in 2009 from Imperial College London and was awarded Fellowship of the Royal College of Surgeons in 2012, for which he was awarded the ASGBI Gold Medal for outstanding performance.

Prior to becoming a consultant he undertook colorectal surgery fellowships at St. Mark’s Hospital, London, the Royal Prince Alfred Hospital, Sydney and was the 2013 Association of Coloproctology’s visiting fellow at the Cleveland Clinic, Ohio, USA. In 2015 he was appointed consultant surgeon at Chelsea and Westminster Hospital and honorary clinical senior lecturer in the Department of Surgery and Cancer at Imperial College London. He is a core member of the hospital’s colorectal cancer MDT, endometriosis MDT and inflammatory bowel disease MDT and jointly established and chairs the abdominal wall reconstruction MDT. In 2015 Oliver published his first book entitled ‘Going into Hospital? A guide for patients, carers and families’ which seeks to engage patients in their care throughout the entire pathway and help patients improve their quality of care directly. He has written over 70 scientific papers and book chapters on surgical techniques, medical leadership, patient safety and surgical education.

Oliver is married and enjoys fitness training, travelling and skiing and is a keen oenophile.

Contact

For same day consultation with Mr Oliver Warren contact his personal assistant, Miss Gabriella White

Telephone: 0208 099 8516

Email: pa@chelseacolorectal.co.uk
To read reviews of Mr Warren’s care please visit https://www.iwantgreatcare.org/doctors/mr-oliver-warren

Mr Dimtrios Nikolaou

Consultant Gynaecologist --- Specialist in Reproductive Medicine and Surgery
Mr Dimitrios Nikolaou is a Consultant Gynaecologist and Specialist in Reproductive Medicine and Surgery. He is one of the most experienced fertility specialists in the UK and is a recognised authority in the areas of infertility in the late thirties and in the 40’s, as well as the assessment of the ovarian reserve and management of the early onset of infertility in younger women (‘early ovarian ageing’). He has lectured internationally on these topics and leads an active research team. He has also undergone extensive training in advanced minimal access surgery with emphasis on endometriosis and is therefore uniquely qualified to be part of the endometriosis team.

He is a graduate of the University of Athens Medical School, Greece, and has worked continuously for the NHS, in the United Kingdom, since January 1994, becoming a member of the Royal College of Obstetricians and Gynaecologists in 1997 and a Fellow in 2016.
He completed seven years of specialist training in all aspects of Obstetrics and Gynaecology in England and Scotland with emphasis in evidence-based medicine under Professor Alan Templeton, 2 more years of clinical research in Assisted Reproduction Technology at the Hammersmith Hospital in London under the supervision of Professor Lord Winston, as well as 3 years of full sub-speciality training in Reproductive Medicine and surgery at Chelsea and Westminster Hospital under Professor John Studd, prior to taking up his Consultant post in 2005. He holds full UK speciality accreditation in Obstetrics and Gynaecology, full sub-speciality accreditation in Reproductive Medicine and Surgery, as well as formal accreditation in minimal access surgery.

He still works in the NHS, at the Chelsea and Westminster Hospital, where he is the Clinical lead for the Assisted Conception Unit and director of the Sub-specialty training program in Reproductive medicine. Under his clinical supervision the team provides more than 3.000 outpatient infertility consultations and over 1000 assisted conception treatment cycles each year. He leads the ovarian ageing and fertility program as well as the infectious disease program. His Unit is a centre of excellence for the management of infertility, especially in women in the late thirties and forties, and UKs only centre for the management of infertility in couples with blood-borne viral infections such as HIV or Hepatitis B and C. He is also an honorary senior clinical lecturer at the Imperial College School of Medicine and is heavily involved in the training of new doctors.

Just over10 years ago he founded “Fertility for life”, with the aim of promoting a more creative and fulfilling life. Through his private clinics he has been providing independent medical advice and treatment, in collaboration with selected top laboratories in the UK and abroad.

His research currently focuses on sub-fertility related to compromised ovarian reserve due to various causes, such as endometriosis or surgery, the effect of blood-borne viruses on ovarian reserve, the development of screening strategies to detect women whose ovaries will ‘age early’, and the association of ‘early ovarian ageing’ to other aspects of human ageing.
Mr Nikolaou published the first papers about the link between poor response to ovarian stimulation in asymptomatic young women with subsequent early menopause and he later described “early ovarian ageing” as an entity suitable for screening. He was part of the working group of the Royal College of Obstetricians and Gynaecologists on Reproductive ageing and he co-edited the relevant RCOG book, as well as the guidelines and recommendations for clinical practice and research.

Mr Nikolaou has a strong interest in philosophy and especially the philosophy of happiness, and also enjoys cycling, restoring vintage bicycles, abstract painting, building industrial models and sculpture, walking and reading.

If you need any further information you can also visit my website www.fertilityforlife.com and my contact number is 07515 161 203.

Mr Bijan Khoubehi

Urological Surgeon
Bijan Khoubehi is a Consultant Urological Surgeon at Chelsea and Westminster Hospital NHS Foundation Trust. He qualified at Charing Cross and Westminster Medical School in 1994. Following basic surgical training, Bijan carried out his urological training in London. Having completed his general urological training, he undertook two fellowship years in Urological Oncology. Mr. Khoubehi was awarded an MD thesis for his research.

He treats patients with general urological conditions and has a special interest in uro-oncology, laparoscopic and robotic surgery. He has been performing robotic surgery since it became available in the United Kingdom. has been awarded a British Urological Foundation scholarship for Robotic Surgery. He is very experienced in pelvic surgery and has been involved in managing urological aspects of patients with endometriosis. Bijan Khoubehi is the lead clinician for urology at his NHS practice and has a busy urology practice performing robotic, laparoscopic and open surgery for urological conditions. He has published widely in peered reviewed journals. Bijan lives in London with his wife and two children.

Sarah Wolujewicz

Physiotherapist specialising in women's health
Sarah graduated from The University of the West of England in Bristol in 2005. After working within musculoskeletal outpatients for several years, she decided to venture into the specialist area of women’s health physiotherapy. This began at St George’s Healthcare NHS Trust in 2010 where Sarah developed her skills and knowledge treating women with pelvic floor (bladder and bowel) problems, pelvic pain including pain related to endometriosis and pregnancy-related musculoskeletal conditions in an outpatient setting. She has gained inpatient experience advising women after giving birth and after having gynaecological surgery. Sarah has led several classes for pregnant women, including parent education sessions and pregnancy Pilates.

In 2013, Sarah moved to work at Imperial College Healthcare NHS Trust where she independently managed a community-based continence service for women. She currently manages specialist clinics for women following birth who have sustained perineal trauma and for those with vulvo-vaginal pain, e.g. pain during sex. Sarah has recently started the role of Service Lead for the women’s health physiotherapy team at Imperial College Healthcare NHS Trust, one of the largest teams in the country.

Sarah has completed a Masters level postgraduate certificate in physiotherapy in women’s health at the University of Bradford. She has also attended several specialist courses related to women’s health including acupuncture, advanced manual therapy techniques for pelvic floor dysfunction and chronic pelvic pain.

Mrs Cecilia Neri Linares

BSc, MSc
Cecilia Neri Linares is an internationally experienced Nutrition Educator who currently offers bilingual private clinics in Chelsea, London. She has more than 14 years of experience in Health Promotion and Nutrition Education. She holds a Masters of Science degree in Nutrition Education from Columbia University, New York, and a Bachelors of Science degree in Food Science and Nutrition. She continues updating her knowledge as more research emerges in her field around the world. Cecilia offers hands-on nutrition education to adults, both in English and Spanish. She offers Genetic testing, Sports nutrition education; Nutrition Education after chemotherapy; Weight management programs; Detox diet programs; Nutrition Therapy for managing chronic conditions; Food allergies.