What is Adenomyosis & What are Adhesions

What is Adenomyosis?  
Adenomyosis is where endometriosis is found within the muscle wall of the uterus.  A gynaecologist may be suspicious adenomyosis is present because of symptoms and the uterus can look and feel 'bulky'.  Some women can have both adenomyosis and endometriosis.   The symptoms of adenomyosis often respond well to medical treatment and an IUS (Intrauterine System) is often offered. A hysterectomy is sometimes recommended to remove the uterus but this will depend on many factors including your choice.

What are Adhesions? 

Adhesions are bands of fibrous scar tissue which cause organs or tissue to stick together in an abnormal way eg, the ovary to the pelvic side wall. They may be congenital, or caused by endometriosis or indeed by surgery.  Adhesions can cause pain and disrupt normal function. Adhesions should be removed during surgery and every precaution taken to prevent their recurrence. They often look like rubber bands and or cobwebs!

Paracetamol is not helping my pain. What else can I take to help give me some relief?
Paracetamol alleviates pain by reducing the body’s sensitivity to pain.  It belongs to a group of medicines called simple analgesics and is used for mild-moderate pain.  Since this medicine doesn’t stop the body producing prostaglandins (chemicals that cause the cramping type of pain) taking an anti inflammatory e.g. ibuprofen, Diclofenac, either in combination or instead of, is often a good option.  Codeine is a stronger pain reliever and reduces your perception of pain by blocking pain signals from nerves in your body.  It can be used alone or in combination with Paracetamol and anti-inflammatories.

Can I take Ibuprofen and Naproxen together to give me better relief from period pain?
Ibuprofen (Nurofen®) and Naproxen (Naprogesic®, Synflex®) are both anti-inflammatory medicines that work by preventing the body producing prostaglandins. These chemicals cause the cramping type of pain that occurs on the days at the beginning of your period. Taking anti inflammatories results is less pain, swelling, and inflammation. However, since they work by stopping the production of prostaglandins, they must be taken before any of these chemicals are produced. Therefore, you need to start taking anti inflammatories at least 24 hours before you expect to pain to occur. Not taking these medicines until after you feel pain, means the medication cannot block the pain-producing chemicals as they have already been released, so they cannot stop the pain.

Since these medicines are in the same group/family it is not recommended that you take both together.  A side effect of taking anti inflammatory medicines is stomach/gastric irritation.  Taking each dose with food can help reduce any of these effects.  If you are already taking an anti inflammatory (ibuprofen, naproxen, Diclofenac (Voltaren®), mefenemic acid (Ponstan®) medicine you can still take Paracetamol and or codeine containing medicines as these work quite differently and block pain.

I have been told that if I go on to the 'pill' it can help relieve some of my endometriosis symptoms.  How can a pill used as a contraceptive do this?
The ‘pill’ or combined oral contraceptive pill is not just one drug. There are many different types, with each product containing a specific low-dose combination of synthetic oestrogen and progestagen (progesterone). The medication alleviates the pain of endometriosis by suppressing menstruation while still controlling normal hormone patterns, and inhibiting the growth of the endometrial implants.  Ovulation is also prevented so ovulation pain can be treated by taking the pill.  Taking the pill continuously allows you to decrease the number of periods per year, therefore usually results in less period pain. The pill is often used as a first line treatment, but isn’t suitable for everyone and it doesn’t work for some girls and women.

What is the difference between an IUD and GnRH products?
An IUD (intrauterine device) e.g. Mirena® is a tiny plastic t-shaped device that releases progesterone (levonogestrel) directly to the uterus. The progesterone acts locally in the uterus and only a small amount is transferred to the bloodstream.  The Mirena® IUD reduces bleeding and dysmenorrhoea and provides superior effectiveness compared to traditional copper IUDs.  The device can provide contraception for up to 5 years while making periods lighter and usually less painful.  New endometriosis lesions may be discouraged from forming once a Mirena® IUD has been fitted.
GnRH(Gonadotrophin Releasing Hormone) analogue products are a range of medicines that, when used continuously for longer than 2 weeks, they stop oestrogen production in several different ways. These medicines seems like natural GnRH to the body but they work by preventing an egg being released and cause very little oestrogen to be produced. This deprives the endometrional implants of oestrogen causing them to become inactive and degenerate.  These are usually given as a long-acting injection once a month for up to 6 months. While on GnRH analogues your periods usually stop, therefore are an option for treating painful periods. Some women experience unpleasant side effects. Symptoms can often return following a course of GnRH.

I had sex for the first time last year when I was 16 and it really hurt. I know it can hurt the first time but I’ve had sex a few times since then and it still hurts. My periods are really bad as well and sometimes I stay home from school. We had the ‘me’ programme come to my school and we were told that painful sex is never normal. Now I don’t want to do it. What do you think I should do?    - Polly
Hi Polly - I was really sad to hear that your first sexual experiences have hurt.  I’d like you to think about the words you used. Sometimes things can hurt or sometimes things can be painful.   What do you think you experienced?  There are a number of reasons sex can hurt like if there is not enough lubrication, if your hymen is still intact, if you are uptight and not relaxed or have an infection (like thrush).  If you are at all concerned and it’s still happening, you should talk to a doctor or nurse. It might be quite simple and easily fixed and you normally feel better when you’ve shared something which is concerning you.   Pain with sex is never normal. Sometimes the pain can be felt deep inside and some women use words like throbbing, stabbing or sharp to describe what they feel. It can be painful at the time and even ache afterwards for a short time or sometimes for several hours.  Sex wasn’t designed to cause this sort of pain!  Painful sex is a symptom of endometriosis and if your periods are also causing you enough grief that you have to stay at home, this is definitely time to talk to a doctor. Make sure you tell the doctor all the symptoms and the things that you are worried about. What you describe isn’t life threatening Polly, but it can make you feel miserable and bad about yourself and your relationship.  Remember, when you feel bad, others around you can feel bad too.  Symptoms tell us there’s something not quite right and the sooner we check things out, the better off we are.  A doctor might suspect endometriosis and talk about a plan to help your pain and improve your quality of life.  It’s also a good idea to monitor your progress so that everything’s fine in the future if you want to have a family

I’ve had bad endometriosis since my periods started and while I like my job, my boss doesn’t have much sympathy for me.  I’ve used up all my sick leave (mainly on doctor’s visits and surgery). I feel isolated and don’t know what to do.
You have raised an issue which is the reality for many women in the workforce and it’s tricky to sometimes find the best path through.  Through no fault of their own, many women are in an unenviable position in that they need and want to work and yet their health lets them down. What’s more, having endometriosis is costly in lost productivity, relationships, physically, emotionally and financially.  It’s not only the pain, you can also feel isolated, exhausted and suffer other symptoms too.  It’s usually sensitive discussing these matters with employers, particularly when you don’t seem to be any better despite having treatment.  Your boss may very well have other reasons for having a short fuse and your health concerns have just become another gripe.  It’s time for you to take stock of where you’re at.  It doesn’t sound to me like carrying on like this is an option!

Well, there is a way through! 

1.    Take time to assess your health and your needs.  This may sound simple but once you get on life’s roller coaster, the important things often get put on the back burner.  Sometimes I use two words – ‘distress and discomfort’, to ask those questions.  If any symptoms are distressing, you need full gynaecological review as to why.

2.    Take time to talk to someone close to you and share your concerns.  Many women harbour their feelings and pain because they don’t want to appear like the complaining type and because it just gets so dull and boring feeling sick most of the time.  This is usually when you become sick and tired of being sick and tired. So, you probably isolate yourself and those close to you are often left in the dark.  It’s really true that ‘a problem shared is a problem halved’.   Hopefully, through sharing and discussion, you will be able to nut out a few key things you can do make change.  Make a list and tick the boxes as you action the things.

3.    Not all gynaecologists are endometriosis specialists.  You may have had surgery to treat the disease but was it resected or removed explains what kind of surgery is considered ‘best practice’ by those gynaecologists with a special interest and skill in treating the disease.  We’re really fortunate in NZ to have quite a few who do!  See if you can get a referral to one of these specialists or you may be in a position to access this through one of the private endometriosis clinics in the country and some hospitals have specialist gynaecologists.

4.    There is usually a medical plan which can offer you relief. You need something to get on top of the pain now, while you wait for gynaecological review and there are hormonal drugs which can effectively slow progression of disease and bring some pain relief.  The latest of these drugs have fewer side effects but you need advice from your doctor and specialist gynaecologist who understand. Sometimes an IUS (Intra-uterine-system), a contraceptive which is fitted at the time of surgery and can help to slow disease progression and give relief from heavy bleeding and pain.

5.    Once symptoms start to impact on your life, you also need to think about self management options. For instance, if you have bowel symptoms (like bloating, diarrhoea and fluctuating bowel habit, excess and painful wind and pain going to the toilet) you can modify your diet which can help such a lot.  There are specific foods which tend to trigger

6.    Pick a good time to talk to your boss about your health and work.  Often employers will consider anything which shows productivity and workplace happiness will be enhanced.  Maybe this could be raised by the staff and ideas could be brainstormed, BUT make sure the employer doesn’t think it’s a full on attack or revolt.  State the positive spin offs about introducing things which are going to make you an even better employee. This could be shorter but more frequent breaks through the day, glide time hours or improvements to your workspace. Depending on the job, some employers have agreed to a partial ‘work from home’ situation.  Corporate companies often have wellness programmes and the subject could arise out of that. You may even be surprised how many others at your work suffer similarly and your work may even consider special arrangements because of this.  Find out about the WISE programmeand see whether it would be possible to have this at your work.  WISE has covered all topics relating to gynaecology including menopause and fertility and it can be framed to suit your workplace.  Remember too, that while these are woman’s conditions, men suffer too! 

7.    Weigh everything up and think about ‘now’ and your future.  Can you actually afford to take a few months off and concentrate on your health so that you are able to work in the future?

What is endometrioma?
An endometrioma is the medical name for a cyst of endometriosis usually found growing in the ovary or sometimes both ovaries.  They are often referred to as chocolate cysts because they are filled with thick chocolaty type fluid.  Endometrioma’s can distort the ovary and impair ovarian function.  They can be fully excised leaving normal ovarian tissue but this requires advanced surgical skill. Depending on age or fertility, an ovary may need to be removed because of the severity of the endometrioma(s).  You should always be fully informed if this option is considered. 

Can endometriosis come back after surgery?
This is a commonly asked question and the answer can be complex.  Quite simply the answer is ‘yes’ but it does depend on quite a few factors.

·         We don’t yet know the exact cause of endometriosis so, while it can be removed or excised at surgery, this doesn’t guarantee a long term cure.   

·         The exact percentage of how often endometriosis can come back varies and depend on the type of surgery and other treatments you may have. However, it does seem that endometriosis recurs more often in girls and young women.

·         The best outcomes tend to be with: a) complete removal of endometriosis (excision or resection). It is therefore important to ask what technique your surgeon uses and whether they are skilled in advanced laparoscopic procedure, b) a multi-disciplinary approach to treatment and management.

Why am I still in pain when I have tried everything?
This can be so frustrating and exhausting.  Unfortunately it can be common to feel this way.  Read the pages on treatment and management.  Sometimes it feels as if you’ve tried everything and there’s no hope for having an improved quality of life.  But, there is hope!  Where endometriosis seems to take over and become all consuming, one treatment is often not enough.  When things reach this point surgery or medications on their own are unlikely to be the answer.  This is why we advocate a multi-disciplinary holistic approach to treatment which is considered best practice.  All symptoms should be investigated. Women can have nerve pain which is sometimes called neuropathic pain and nerve entrapment has also been identified as causing ongoing pain.  You can do a lot to help yourself by identifying the pain. Is it stabbing, burning or sharp?  Is the pain constant or aching and dull?  The different types of pain are explained fully in the book “Endometriosis and Pelvic Pain”.   Be clear about what symptoms have improved since surgery, what’s different and what’s remained the same or even worsened.  You can do a lot to help yourself with self management, some of which are explained in the management section.  Ultimately, if things persist, you will need help from a multi-disciplinary team of experts AND investigate the lifestyle changes which can relieve some of those painful and exhausting symptoms. who can consider all the facts and help you with a pathway to deliver the best possible outcomes.

Can I still get endometriosis after I have a hysterectomy?
YES.  Endometriosis needs oestrogen produced by the ovaries to be active, so removing the uterus at hysterectomy doesn’t mean curing the disease.  Many women have relief following hysterectomy but it’s important that the surgeon removes the endometriosis as well, not just the uterus. A hysterectomy will cure adenomyosis.  Sometimes, in very severe cases, a surgeon might recommend removing one or both ovaries as well. This is called an oopherectomy or bilateral oopherectomy (both ovaries).  This option requires a lot of discussion with specialists as well as taking into account your own feelings and your age, fertility and other needs.  Be well informed.

Can teenagers get endometriosis?
The answer is ABSOLUTELY.  It’s really common for symptoms to start in the teen years, sometimes from the very first period.  This is particularly so if there’s a family history of endometriosis or menstrual pain and troublesome symptoms.  It’s really important not to delay seeking help as early intervention is vital to improve quality of life, relieve suffering and avoid the possibility of fertility being compromised down the track.

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