Updated: Oct 2, 2020
Diagnosis To help get an early diagnosis – get a symptom diary. This can be a plain lined notebook or a specific diary made for recording medical issues. Patients have the right to request to be referred to a professional of their choice, even if they are not local. Drs will usually refer for an ultra sound scan. These are not always helpful for superficial endometriosis however a specialist or radiologist with an endo interest will be more likely to see deep infiltrating endometriosis (DIE) on a transvaginal scan. MYTHS: Myth: Endo is difficult to diagnose – Mr George says: It can be because it mimics other conditions. Diagnosis is not particularly difficult if you are in the right place with the right people. Myth: You’ll never get pregnant – Mr George says: Not true. It does have an effect. It can affect the eggs and the tubes ability to pick up the eggs. Treating the mild or moderate endo helps increase fertility. Treating severe endo improves the relationship between the reproductive organs. Removing chocolate cysts is likely effect the eggs in that ovary. Generally, cysts smaller than 3cm don’t need to be treated as they are unlikely to ‘get in the way’ of fertility. Any cyst larger than 3cm should be drained. . Myth: No point in treating endo as it will just come back – Mr George says: It comes back in 30-40% of people, hormone treatment after can help to prevent reoccurrence (even when trying for pregnant). Myth: Hysterectomy is the only way to treat endo – Mr George says: There are less radical treatments available. Removing the womb alone is never a solution and not commonly helpful. Myth: Get pregnant and it will go! – Mr George says: He gives hormonal injections and progesterone suppressants. Often women who do find an improvement through pregnancy will find that once breast feeding ends the endo will come back. Myth: You cannot have hormone replacement if the ovaries have been removed – Mr George says: These women can take hormone replacement therapy (HRT) but it needs to be the correct type. Cramps or endo? If the pain and cramps start with the period, lasts 1-2 days, the pain comes and goes with the period and you take pain killers and they are effective then it’s likely not endo. Endo patients – often take time off work, they experience the worst pain during the period, the pain is enough to leave scars on women’s lives. Pain has a large impact. Pain can also be present throughout the cycle, particularly during ovulation; pain during sex and several hours after or sex impossible; relationship problems and pain opening bowels, particularly during periods, Talk about it - Talk to GP - Speak to family and friends - Use online resources - Ask to see a specialist (referral) – you can self-refer (if you can self-fund) - Ask for a pelvic scan Any endo less than half a cm is often missed on a scan. The amount of endo isn’t correlative to the amount of pain or symptoms. For example: small amounts can cause serious problems/pain and large amounts can avoid nerves and not be painful at all! - A laparoscopy (lap) is conclusive General gynaecologists can do initial laparoscopies. Some are not used to looking for it – and some find endo by accident for example during an appendix removal. 20% of laps of Mr George’s patients are people who have had a previous lap but nothing has been found. With thorough searching, often endo is then found. Mr George explains that mild and minimal treatment to be undertaken in initial lap. Severe endo to be taken out if prior investigation has been completed otherwise a second lap should be undertaken after investigation and necessary scans have taken place. Da Vinci Robot – clearer images, preserves nerves, cleaner surgery Endo In teens Keep a symptom diary and try painkiller and contraceptive pill (under the guidance of a Dr of course). If symptoms are not responsive to regularly painkillers and oral contractive pill only then Mr George advises a lap and to take the same treatment steps same as adults. Recent advances For a normal laparoscopy, the surgeon will have a TV screen facing them. In the robotic theatre, the surgeon will sit on a console (on right hand side of picture below) whilst manipulating the device from controls under screen and the robot replicates movements to operate on the patient. The surgeon still in room and is not yet replaced by machines! Using the robot removes fatigue, especially when the longest endo surgeries can be 12-13 hours. The robot offers smaller cuts for bigger surgeries within a multidisciplinary approach. It is nerve sparing; the uterosacral ligament (USL) in particular. It also gives new understanding on the condition. Mr George explained how some patients experience electric jolts at the top of the vagina. Now surgeries show there are tiny nerves behind the vagina that are affected by endo and explain these symptoms. The robot is also actively preventing scarring and therefore preventing adhesions too. In turn, this preserves the relationships between parts of the body, Mr George also uses adhesion barrier to further prevent adhesions following surgery.
Not always surgery There are medical treatments that can be tried this are based on stopping ovulation to suppress cyclical hormones through injections, the pill, marina coil, implant or Prostrap/Zoladex (these can give 6 months or induced menopause). Mr George routinely uses these injections for severe endo patience for 6 months before surgery, particularly when it’s on the bowel as this can reduce complexity of surgery. Mr George emphasises that the specialists should not just be treating endo and should be treating all of us to improve quality of life. Treatment should be guided y the patient’s symptoms. What does everyone need? - Awareness - Approachable health system - Accessible specialist care - Acknowledgement – first thing he encourages consultants to do is to acknowledge the patients symptoms and pain. firstname.lastname@example.org – You can email him to ask questions. He also offers diagnostic packages. For appointments you can also send him an email. QUESTIONS What is the biopsychosocial impact of endometriosis? No doubt it is multilevel impact. There is definite impact of personal and social – all facets of life. Good evidence of effect on economy runs into billions from endo. Often he sees patients that are waiting for diagnosis and their employers don’t know about endo and cases employment problems. Government has been trying to increase awareness. Endo awareness month is now March when media platforms increase awareness. Answer is in the hands of patients – making your world aware and that there are good treatments available which can reduce the impact of endo on life. I had a hysterectomy 4 year ago, but still have my ovaries. Post hysterectomy, I’m still in pain; what can I do? Mr George assumes that this lady has years to go until menopause. Moving the ovaries is likely to stop endo symptoms but will start menopause. There are procedures where the ovaries can be moved into a position where they are unlikely to get stuck again and this can improve symptoms. He advises her to stop ovulation and talk to her specialist about the many ways available. How do you tackle a GP who won’t refer you to specialist? It’s very difficult to refute written evidence – take a symptom diary, take patient info leaflet from their website (I apologies as I’m not sure which website this refers to Robyn? Jodie? Do you know?). Consultants are happy to see patients and no specialist will refuse a referral if there are reasonable grounds to suspect endo. What is the likely hood of the condition remaining dormant after pregnancy? There is a small percentage of women who won’t have it recur after pregnancy. Pregnancy will cause the appearance of the endometrial tissue to change. Mr George explains that mild or medium endo may not come back. Severe endo may take up to 1-2 years before it comes back. There is no hard or fast rule to this but it’s in his experience. Consultant put me on Prostrap – will this affect me having a baby? It will stop ovulation after the first two months. While you’re on it, you won’t fall pregnant. Once you stop, and a few a months have passed, your periods and fertility will return. I was diagnosed 20 years ago. It was cut away. I’m experiencing lower rib pain now; could this be endo? It has been found in any part of the body i.e. lungs, and lining of the brain. It’s most common in the lower part of the abdomen, but it can be found at the top of the abdomen and on the diaphragm. There are symptoms of diaphragmatic endo which include nerve pain in the shoulder which is referred from the diaphragm. Advanced imaging (MRI) can be used to check or lap to find answers. Small cysts and fibroids can cause so much pain. After operations I’m still in pain. Surgery is expensive and now I’m being refused surgery? Dr George thinks recurrence of cysts and size of cysts. The size of cysts should not prevent you having surgery. These are markers for DIE and should be investigated. The size of the cyst itself is not an indicator – the presence alone is the indicator. If the cysts are not endometriotic, then that would be a reason not to operate. Scans and cross section imaging would give an idea if surgery would be justified. What is the percentage that you can have children and how does it affect fertility? Presence of endo has an effect thought to be due to inflammatory substances that are released and can affect the normal functioning of fallopian tubes. This inflammatory reaction can result in infertility. Adhesion can physically restrict the uterus, ovaries and fallopian tubes to prevent the travelling of an egg and therefore reducing fertility because the egg is less likely to pass through into the correct places successfully. When surgery is carried out on the ovaries, the eggs in that ovary can be affected which can potential harm fertility levels. Adenomyosis has an effect on fertility. Treating mild to moderate endometriosis increases chances of conceiving naturally. Removing large chocolate cysts carefully can increase fertility in the 6-12 months following surgery. 30-40% of people with endometriosis will suffer with some infertility. Surgery is the best way to improve this. Can you explain the American classification of endo? American fertility society classification = different degrees of endo. There are many different ‘grading’ systems that are not consistent against each other. Realistically, none of the classification systems help in the treatment of endo. The best way of sharing the severity of your endo is to have a video recording of the laparoscopy which can be shared between professionals to manage condition more effectively. Why does DIE affects fertility? How successful are women at conceiving without surgical intervention? There is a possibility that surgery can have a negative impact on fertility. The most common form of DIE is found in the rectovaginal area – this is where the reproductive organs are positioned. Endo here is likely to have an impact on fertility. Lesions and inflammation are likely to be in this area and cause problems. Surgical treatment can improve fertility problem. Although these numbers are low, women can still fall pregnant naturally. Endo in the front of the pelvis i.e. bladder and on the bowel does not have a large impact on fertility. It is endo that is around the uterus, fallopian tubes and ovaries that mostly effect fertility. Can you explain the ovarian types of endo please? This starts in your ovaries. It starts with a deficiency on the ovary itself or the USL (goes from back of womb to tail bone). Endo can be within the ovary (intraovarian) or on the outside (extraovarian). Both have an effect on ovarian reserves. To treat this surgically, the surgery has to ‘shell out’ the cysts which can have an effect on the eggs remaining in the ovary. Some surgeons are able to remove it without a lot of impact on the ovary. It depends on the position and size. With small deficits of endo it’s possible to burn it rather than cut it – it depends on stage of disease. I’m a paramedic and regularly called to abdo pain cases that are often endometriosis. How can I best support people who are a call out with abdo pain? Mr George explain ether are usually two situations for an endo sufferer to call out the emergency services: 1. ‘Cyst accident’ – A large cyst that has popped and its contents have spilt into the abdomen which is incredibly painful. Scans needed to check for fluid in abdomen and check ovary as it may have had a collapse. 2. The person had intolerable pain – Ask if they are on their period and dealing with pain that is not lessening after 48 hours. Ask when the pain started – with period or days before as these are tell-tale signs that the pain they are suffering could be endo. Sign post these patients to their GP or specialists so they can have treatment and an ultrasound in A and E. Have you known severe migraines after endo has been removed? IBS and endo - 40% of patience have both. Bladder pain and endo is common – sometimes cystitis is in the mix too. Migraines can get worse with endo. There is a definite link between hormones and migraines. There is a percentage of patients who get better when stopping their cycle. Can diet reduce endo? Good evidence – learnt from his patients experiences that some diets do help. Patience are the best guides of their own bodies. Some try reducing gluten – as we get older we are less likely to tolerate gluten. It can also increase inflammation. Withdrawing from gluten can reduce symptoms particularly bloating. Withdrawing dairy can also be helpful. Try what works for you - including herbal medicines. Struggling to conceive. Had surgery 4 years ago. Back and forth to GP but all I’m told is to have a baby and it’ll change. Miscarriage 2 years ago. What is the best treatment to have when trying to conceive? A common misconception is that pregnancy controls endo - particularly severe endo. If you are still in pain and not conceiving, try and find out the severity of endo then plan from there. From there, you can sign post treatment of endo and look into fertility retreatment too. They usually ask you to try for a baby for a certain amount of time. Not everyone needs surgery, but if you are not falling pregnant then intervention may be need. Is it possible to be diagnosed with polycystic ovary syndrome (PCOS) and endo? PCOS is a condition is associated with absent periods, weight gain and hair growth. Depending on the degree – it can beneficial to endo. It can stop endo getting worse due to the balance of hormones produced. He has seen patients with both. It is not the most common association but it does happen. Why do I get low break fever before periods? Endo is an inflammatory condition and low grade temperature can be associated with endo but temperature fluctuation is normal around ovulation and periods anyway. Low grade pyrexia and endo is a common association.