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The pain of endometriosis – making a diagnosis (Part 1)



In the previous installment of this essay, we described in detail why endometriosis happens, why one has the symptoms associated with it and the different types of symptoms that normally accompanies the diagnosis of endometriosis. In this section, we shall tackle how we make a diagnosis for this disease, and further how one can establish fairly certainly if they have a high likelihood of having endometriosis.

Like all medical conditions, the diagnosis of endometriosis follows the well-established routine of history taking, physical diagnosis, and ordering targeted tests that can either rule in, rule out or confirm the diagnosis of the condition. One key element of its nature is pain, wherever it may occur, coming during the menses. The pain of endometriosis may come a week or two weeks before the onset of the menses, become severe during the menses and wane after the period, only to repeat its course in subsequent cycles. The key here is the cyclicity of the pain with respect to the menses. As mentioned in the previous instalment, the severity of the pain has little to do with the stage (severity) of the disease.

A patient with endometriosis will therefore have cyclical pain. The nature, location and associated symptoms of this pain would largely depend on the sites of the implanted endometriotic implants within the pelvis. If the endometriotic lesions (diseased areas or spots from endometriosis) are only limited to the pelvic side walls, one is likely to have generalized lower abdominal and or pelvic period pain, and painful intercourse. If the endometriotic implants seed onto the bowel one is likely to have bloating, constipation, diarrhoea, painful defaecation, bleeding with bowel motions and in worst cases, bowel obstruction. When the implants are seeded into the vagina and cervix, extreme pain with intercourse, bleeding with intercourse or after a period are the commonest symptoms. Whereas the above symptoms may suggest endometriosis, they are not by themselves diagnostic of the condition. Endometriosis shares similar symptoms with other diseases.

It is however important that when one has a combination of the following symptoms, one can be 80% certain that they do have endometriosis. These symptoms are, chronic lower abdominal pain, cyclical period pain, painful intercourse and pain with defaecation. The existence of this combination of symptoms in one individual should prompt one to seek immediate medical help. Cyclical pain in the belly button, abdominal wall, chest, legs, bones, shoulders and the like carries the same weight as period pains in the diagnosis of endometriosis.

When one is preparing for a visit to their doctor, one is advised to pay particular attention to the relationship of the pain to their menses. Secondly, to pay attention to associated symptoms that come around the same time with the pains. The medical doctor would need this information to link the symptoms with the menses and hence narrow the causes of the pain to among others, endometriosis.

Considering the debility associated with endometriosis, one can think that patients would have a fast-tracked medical diagnosis. However, sadly this is not so. The range of time between the patient presenting at a doctor’s room to the time of diagnosis is a whopping 3-12yrs. Majority of women will have a medical diagnosis of endometriosis after 5-8yrs of seeing doctors. Usually they may have seen several doctors including specialists. This scenario is not one to be proud of as a doctor, but there are reasons, real reasons why it happens. First, most patients are started on pain killers to contain the pain which must be assumed to be endometriosis albeit without a definitive diagnosis.

When this does not help one is likely to have been started on the oral contraceptive pill, some progestins such as depo provera, mirena coil, or the transdermal implants in a bid to control the pain. Throughout this time, while a definite diagnosis of endometriosis would not have been made, the treatment of endometriosis would have been already commenced, although it is usually ineffective. It is only when this fails that a definitive diagnosis of endometriosis would be sought by the doctor, often requiring invasive procedure. The other reason that no doctor would be proud of is that the mix of symptoms and their perceived severity may downplay endometriosis as a cause of the pain. In this case a doctor is more likely to chase other diagnoses other than endometriosis, inadvertently extending the time between first contact and diagnosis.

Assuming that what is common is common, most patients with endometriosis would have gone through a lot of medications for sexually transmitted infections before proper treatment would follow. This, by far is the commonest reasons why delay in diagnosis happen, as endometriosis shares some of its symptoms with sexually transmitted infections. It is important as a result, that women who have been given multiple doses of combination antibiotics for persistent abdominal and pelvic pain, should seek referral to other doctors in the referral chain in order to expedite diagnosis and containment of their symptoms.
Vaginal Scan
A simple and common test for endometriosis is a vaginal scan. A routine vaginal scan would show a chocolate cyst (ovarian cyst full of menstrual blood) when present. If this cyst is found, the doctor would look for endometriotic nodules elsewhere in the pelvis as the presence of this means one has a 30% chance of having a nodule. One of the easiest find on a transvaginal scan is adenomyosis. This is endometriosis affecting the uterine muscle. This type of endometriosis is associated with debilitating period pains and infertility. Other than this, a routine vaginal ultrasound scan would not be that much helpful. It would be obvious during the scan, however, that the patient can barely hold the vaginal probe in their vagina owing to pain.

Endometriosis Mapping
A more advanced form of vaginal scan for deep infiltrating endometriosis exists. This detailed scan is called endometriosis survey or endometriosis mapping. Whereas routine vaginal ultrasound scanning places the vaginal probe on the cervix, in endometriosis mapping scanning is done below the cervix. This sort of scan, would pick vaginal nodules, bowel nodules, nodules on the uterine ligaments, cementing of tissues behind the uterus and inform the doctor if the window behind the uterus is obliterated by disease or not before the operation is done. Further, it tests the mobility of the uterus and the ovaries.

Endometriosis mapping reduces time to proper surgical management, reduces the number of diagnostic and interventional operations a patient would have, and affords a multidiscipline team to co-manage the patient from the outset, saving the patient both finances and time and reducing the risks of multiple operations. This type of scan has the down side of being expensive to the patient and time consuming on the part of the sonographer. An empty rectum is required for this scan, and so one may be asked to take an enema before endometriosis mapping. In good hands and with a quality scan, endometriosis mapping may pick up to 90% of deep infiltrating endometriosis when present.

Barium Enema (sepeiti)
Another test that may be done to diagnose endometriosis is the barium enema (sepeiti). This would involve emptying the contents of an enema into the rectum followed by taking X-rays. The objective of this test is to find if there are endometriotic nodules in the large bowel that may have caused enough scarring as to distort the normal caliber of the bowel. One is more likely to have this test done where their symptoms are associated with diarrhea, incomplete rectal emptying, constipation and bleeding with bowel motions.

Colonoscopy involves passing a camera into the large bowel up to the junction of the large and small bowel. This test can also be done in cases of bowel related symptoms of endometriosis including bleeding during bowel motions. Its advantage over a barium enema is its ability to take a biopsy (sample) of the lesion (diseased area) to confirm a diagnosis before the operation can be done.

MRI scan
Advanced testing with an MRI scan is possible in selected cases. An MRI scan is capable of detecting smaller endometriotic nodules in the bowel, bladder and uterine ligaments. It is great at picking endometriosis of the womb(adenomyosis). Like other investigations it can only pick large areas of fibrosis occasioned by endometriosis. A negative result does not rule out minimal and mild disease. The down side of this investigation is the considerable cost to the patient.

MRI and examination under anaesthesia
Another important investigation is examination under anaesthesia. This involves doing a digital vaginal and rectal examination while the patient is sleeping under the influence of anaesthetic agents. The benefit of examination under anaesthesia is that the patient’s vaginal and pelvic muscles would be relaxed allowing thorough exploration of the vaginal wall, the pelvis, the bowel, uterine ligaments, assessment of the mobility of the uterus and ovaries. It also gives detailed information as to whether the window behind the uterus has been obliterated by this destructive disease. A study comparing the ability of different tests to pick up endometriosis when present, comparing ordinary vaginal scan, a rectal scan, sigmoidoscopy (camera up the rectum and stopping only in the sigmoid colon), MRI and examination under anaesthesia found that the best tool for diagnosis was the use of the old digital vaginal examination under anaesthesia. The down side to this mode of investigation is that one has to incur theatre fees and a day hospital bed fee, making it more expensive. It is possible however, that digital examination under anaesthesia may be offered in the outpatient setting in clinics with a procedure room and availability of an anaesthetist or nurse anaesthetist. Only in this setup is digital examination under anaesthesia cost effective. It is noteworthy that the normal digital examination without anaesthesia has its uses, but falls short of defining the extent of the spread of endometriosis in the pelvis thereby limiting holistic planning for the operation where different specialists may be required to co-operate on the management of the patient.

Diagnostic Laparoscopy
The definitive test for endometriosis remains diagnostic laparoscopy. This is an operation through a key-hole in which the patient is not opened in the usual way. At laparoscopy 2-5 holes, wide enough to fit a pen are made on the tummy. The gynaecologist then gains access into the abdominal and pelvic cavities through these holes. A tiny camera is then inserted at the belly button which then becomes the eye of the surgeon through which he would then search for endometriosis in the pelvic cavity.

A biopsy of the endometriotic lesions would be required to make a definite diagnosis. Without a biopsy, diagnostic laparoscopy over-diagnose endometriosis in up to 50% of patients, leading to unnecessary treatment for a condition that is none existent. A diagnostic laparoscopy is valuable in defining the extent of the disease, the organs affected, and planning for the next stage in the treatment phase. It facilitates referral to a specialist surgeon and informs the kind of team that need to be assembled to tackle the menace that is endometriosis. It however pales in significance in terms of cost savings, when compared to endometriosis mapping scan. As seen earlier, endometriosis mapping allows for a diagnosis of severe deep infiltrating endometriosis, defines the extent of disease, defines the team mixture of surgeons required to tackle the disease from the outset, cutting unnecessary diagnostic laparoscopic surgery. In the diagnosis of endometriosis, diagnostic laparoscopy has its place in non-deep infiltrating endometriosis which is the domain mostly of minimal, mild to moderate disease.
*In the next instalment, we will discuss treatment options for endometriosis and evaluate their effectiveness.

Dr Vincent G Molelekwa is Obstetrician, Gynaecologist, Fertility Specialist, Endoscopic Surgeon, Gaborone Fertility Clinic

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Sun Health

BoMRA warns of cancer-causing impurity



Botswana Medicines Regulatory Authority (BoMRA) is investigating if ranitidine, a common heartburn medicine, has a chemical contamination, which could cause cancer.
The drug is also known as Zantac, Uptake, Austin and R-Lok.

BoMRA issued a warning recently following an announcement on September 13, by the US Food and Drug Administration (FDA) that it had learned that some ranitidine medications, including those known by the brand name Zantac, contain low levels of N-nitrosodimethylamine (NDMA), an impurity that could cause cancer.

NDMA is a possible cancer-causing chemical linked to liver damage. Since last year, the FDA has been investigating NDMA and other impurities in blood pressure and heart failure medicines known as angiotensin receptor blockers or ARBs. However, the FDA cautioned that levels of the NDMA appeared low and not much higher than when the chemical is present in foods like processed or grilled meat. The FDA said: “Although NDMA may cause harm in large amounts, the levels the FDA is finding in ranitidine from preliminary tests barely exceed amounts you might expect to find in common foods”.

Over-the-counter ranitidine is approved to prevent and relieve heartburn and can be prescribed to prevent ulcers of the stomach and intestines. In a statement, BoMRA told people they could still keep taking the medicine or ask doctors to prescribe one of many drugs that treat heartburn or ulcers. The health product watchdog cautioned patients who had been prescribed Ranitidine from stopping without an alternative, advising patients instead to talk to their health professionals before they stop or switch to other medicines.

“BoMRA is urgently liaising with the registered suppliers of ranitidine-containing medicines to investigate the presence of NDMA in Botswana ranitidine products; and will update the public on the outcome of these investigations,” reads the statement.

BoMRA Spokesperson, Israel Kgosidiile said there is no evidence at this stage that the impurity has caused any harm to patients.
“There is no recommendation for patients who have ranitidine to stop taking it. If a patient has any questions they should speak to their doctor or pharmacist,“ he stated.

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Know Your Specialist

‘Cancer took away my boobs, not my life’



Sun Health: What events led up to your diagnosis, or, how did you discover that you were suffering from cancer?

Mpho Kgaodi:My journey with Breast cancer started in 2012. Around April I felt a lump on my right breast. It was not painful at all, just slightly itchy. It was on the upper part of my breast. I ignored it for about three days but it kept nagging me and then I decided to go see my doctor. He also confirmed that there was a lump on my breast He sent me for mammogram that confirmed an abnormality on the structure of my right breast. I then went to see him with the results and he informed me that there are two ways to test that lump – Biopsy, which meant that he will be taking a piece of that lump to send it to the laboratory for examination and the other option was to totally remove the lump, Lumpectomy. I decided that he removes the whole lump, because I really didn’t want that Lump on my breast.

SH: We know that about 10% of all breast cancers are hereditary. Are there other women affected in your family?
MK: I don’t know of any other woman or even man in my family who has had cancer, though it is hereditary.

SH: What were your first thoughts when you received the diagnosis?
MK: I cried for a brief moment. I was overwhelmed with emotions, fear of death. I quickly recovered from that dreadful thought and remembered that I have a great husband and three boys. I felt that I had so much to live for.The doctor informed me about the options I had regarding treatment and he gave me time to think about it. I drove back home to Lobatse and by the time I arrived at my house, I had already made up my mind that I am going for total removal of the breast. I broke the news to my family and they were just as shocked as I was when the doctor broke the news to me. I explained to them my decision to go for surgery and they were very supportive. Few weeks later, I went for a mystectomy.

SH: How long were you in treatment

MK: The surgery was followed by Chemotherapy. The first time I walked into the oncology centre, I found so many people there already. I then realised that I am not the only person with cancer, it is so many of us. It gave me strength and courage. I had heard that the side effects of chemo are brutal, seeing those people made me realise that if others can do it so can I. I decided to go for it as I had so much will and spirit to stay alive and raise my kids. After the second session of chemo, I started losing my hair, nail beds turned black. I was never discouraged though, despite my aching body and the constant nausea after chemo. I had six cycles of it. In 2013 around April again, I experienced severe pain on my left breast, but with no Lump. My doctor again recommended I go for a mammogram. It confirmed cancer which was still at stage 1. I then insisted that they remove the breast. I would lose both my breasts but I knew staying alive for my boys was more important. Other people thought the pain was psychological, and I knew what I felt and my mind was made up. I had the second mastectomy and had to go through another cycle of chemo which I completed. I am now on oral medication. I take my tablet daily. It is recommended that I take it for ten years. I have just started on my year 6 on the tablet. I do go for regular check ups, to establish if the cancer is not back.

SH: What helped keep your spirits up and gave you support during this period?

MK: A good friend of mine and colleague told me about Journey of Hope Botswana. He introduced me to them, and I had tremendous support from them. I also went to Cancer Association Botswana to introduce myself. My family has also been my backbone, supporting me through it all. I am so greatful. On days that my spirits are low, I always take my mind to positive thoughts. I try to remind myself of the good times, sometimes I even find myself laughing out loud.

SH: How has this affected you at a psychological level?

MK: My life has not really changed for the worst. Like the saying “when life gives you lemons, make lemon aid out of them”. I lost my job after the second diagnosis of cancer. While this affected my family financially I never got discouraged, as this gave me time to take care of my family. I am a full time stay home mom. I walk this journey with my family. My boys understand that I had Cancer but now I am okay. They sometimes check if I have taken my medication, and they would even ask about my next appointment. I am blessed to have them.

SH: Facing the diagnosis of breast cancer is one of the most feared experiences in our society. What has been your experience as you worked with communities through Cancer Association of Botswana (CAB)?

MK: Working with CAB has been eye opening. Through motivational talks and other actives like the annual stiletto walk, the message has been positively received. There is still a lot to be done though, especially to make people understand that breast cancer is NOT a death sentence. So many lives can be saved.

SH: Amongst raising awareness, cancer awareness month is about celebrating individuals like yourself and their triumphs over cancer. Is there anything you would like to say to the community of cancer survivors and women in general?

MK: I have learnt so much from being diagnosed with cancer. I appreciate life more. I never used go and see a doctor without any pains or any thing “wrong” with my body. Now I do it regularly and so far I always get a clean bill of health. I encourage everybody to do regular self -breast examination. It is easy, convenient, cost-effective and can really help with early detection. I believe there is a lot to be done as far as breast cancer awareness. Remember men can also have breast cancer.

To all those who are going through cancer at the moment, remember you are not alone. Let’s walk this journey together. Let’s walk with Hope, Courage and Strength. There is life after cancer. Cancer took away my boobs it did not take my life. As October is breast cancer awareness, let’s support those affected, honour the survivors and remember the fallen.

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