Endometriosis is a condition where tissue similar to the cells that line in inside of the womb are found outside the womb, most commonly in the pelvis.



It is responsible for:

Painful periods

Painful intercourse

Pelvic pain

Infertility.

The diagnosis of endometriosis. Why does it take so long?

Endometriosis should be diagnosed based on symptoms, however it is not uncommon for women to go for many years with the symptoms mentioned above without a definitive diagnosis.

In some countries it takes up to 7 years before definitive diagnosis is made in some women.

Reasons for delay in diagnosis include

Knowledge of healthcare professional looking after the woman 

The type of symptoms women present with

Influence of pressure groups


Consequences of Delay in diagnosis

Delay in diagnosis leads to physical, emotional, financial and social consequences.

Because pain can be unrelenting, women may withdraw from social contact as a result of their symptoms and have to take a lot of time off work

Making a diagnosis is important as it provides women with

• An explanation for their symptoms hopefully in a language they can understand
  

• Allows them to become aware of strategies to control their symptoms
  

• Allows them to plan their lives around a potentially debilitating disorder.
  

• Endometriosis is progressive in up to a third of women which is another reason for early diagnosis.
  

If women have these symptoms they need to speak to their doctor. If they do not get a response or are unsatisfied they should always seek a second opinion

What is endometriosis?

Endometriosis is a condition where cells that normally line the inside of the womb find themselves outside the womb.  These cells can find themselves anywhere in the pelvis: on the bladder, on bowel, on the ovaries or on the ligaments that support the womb.

They can be found on the appendix and on occasion in any organ of the body.



How common is endometriosis?

Endometriosis affects between 5-10% of the general female population

In the United Kingdom about 2 million women of reproductive age suffer with endometriosis.

It is commoner in women who find it difficult to get pregnant and have children; it is also commoner in women who have painful periods.

It tends to run in families; about 10% of women who have endometriosis will have a family history of this condition.

What causes endometriosis?

No one knows exactly why some women have endometriosis and others do not.

A number of theories have been put forward to the possible causes. No single theory can explain the reason for endometriosis in all women who are diagnosed with it.

1.     Spillage of cells through the fallopian tubes during periods.

During menstruation about 90% of women will have some spillage of menstrual cells through the fallopian tubes into the abdominal cavity (into the tummy). For most women the body absorbs these cells. In women who develop endometriosis it is thought that these cells are not entirely absorbed. The body then tries another way of protecting itself from these cells. In some women it forms adhesions to block these cells off from the rest of the body. This process may be due to altered immunity in some women.

2.     Transport of menstrual cells through the blood stream

Some scientists believe that the cells travel through the blood to reach other organs of the body. They believe that this is why endometriosis can be found in organs far away from the pelvis

3.     Normal cells can change into endometriosis cells

Other scientist thinks that we are born with cells that have the potential to transform themselves into other cells under certain conditions. And in certain women these cells are triggered by unknown mechanisms to become endometriosis cells

Symptoms of endometriosis:

Endometriosis is not cancer but can be responsible for a variety of symptoms, which include:

1.     Pelvic pain

a.     Pain during periods (cyclical pain)

b.     Pain when not having a period (non cyclical pain)

c.      Pain when opening bowels

This pain may be due to endometriosis on the bowel or endometriosis on the ligaments that support the womb.

 Some women describe this type of pain as worse when they are having periods

d.     Pain during sexual intercourse

e.     Pain on emptying the bladder. This may be due to endometriosis on the bladder

The pain of endometriosis is often described as central lower abdominal pain that can radiate round to the lower back and down the legs

other symptoms include bladder symptoms like going to empty the bladder very often (frequency), or blood in faecal motions (in stool)

2.     Infertility

There is a well-documented link between endometriosis and infertility.

Endometriosis can be responsible for fertility problems in up to 50% of women who have it. However things to note are:

1.     The majority of women who have endometriosis will get pregnant with not problem and the pregnancy will be without problems.

2.     Problems related to endometriosis depend sometimes on the stage of endometriosis

3.     The more advanced the endometriosis the more fertility becomes and issue.

Below is a video showing a large broad ligament fibroid (in an awkward position) being removed by keyhole surgery. The important thing is careful surgical technique, and the use of substances to reduce blood loss and to help prevent the development of scar tissue.

Having fibroids removed is a major undertaking both for the surgeon and the patient. The method of operation will depend on the number and size of the fibroids and how the fibroids are related to the womb.

Traditionally all fibroids were removed by open surgery but increasingly it is now possible to operate on fibroids laparoscopically (using “keyhole surgery), though size, number and site of the fibroids is taken into consideration it is possible to operate and large, “awkwardly” located  and numerous fibroids by means of keyhole surgery.

Irrespective of the type of surgery there are complications that should be considered, this is what I tell all patients who are having a myomectomy:

Just because the fibroids are there does not mean you have to remove them the only reason for removal is to improve symptoms.

Removing fibroids is not a sport

There are reports of more than 200 fibroids being removed from one individual. On occasion this may be necessary but I will remove fibroids that are causing symptoms with the aim to improve fertility. I will not continue just because I can if I feel that the womb will be too scarred it may on occasion be necessary to leave some behind

Things you need to consider before you go ahead

1.     Adhesions (scar tissue formation after surgery)

Most women who have fibroids removed will develop adhesions (scar tissue that is a consequence of tissue healing). The quoted figure is about 90% however this can be halved with laparoscopic surgery. Measures to prevent the development of adhesions should be used during fibroid surgery.

Adhesions can lead to:

a.     Problems with fertility
b.     Problems with chronic pelvic pain
c.      Problems with intestinal obstruction

It is important to ask your doctor what type of adhesion prevention will be used during your surgery

2.     Blood Transfusion:

Fibroid operations are potentially bloody operations; most women who have these operations will bleed. The risk of a blood transfusion ranges from 1 in 20 to 1 in 50 depending on the size of the fibroid, the number of fibroids and their location.

There are surgical techniques that are used to decrease bleeding including temporary tourniquets.

There are also medications that are used to decrease the risk of bleeding these include:

a.     Vasopressin
b.     Misoprostol
c.      GnrH analogues like Zoladex. I prefer not to use this particular drug unless my patients are anaemic as women in whom it is used preoperatively are at greater risk of fibroid regrowth after myomectomy.

For women who want to avoid blood transfusions “cell-savers” where own blood is filtered and used for transfusion can be used.

Ask your doctor about these issues before you proceed with surgery.

The video below depicts a large cervical fibroid being removed with keyhole surgery

Following on from my last discussion about things to think about when having fibroids removed:

Hysterectomy risk:

One of the most worrying things about having fibroids removed is the risk of Hysterectomy. This happens very rarely and only to save life if there is uncontrollable bleeding. Everything will be done to try and control the bleeding, and hysterectomy will only be a last resort. I quote the figure of about 1:250 putting this in perspective if I were do perform a laparoscopy a week it would take 5 years for this complication to occur.

Fertility issues:

Though you may be having your operation for fertility reasons, it doesn’t automatically mean you will get pregnant after a myomectomy. Removal of fibroids can however improve fertility particularly if they are causing obstruction to fallopian tubes or occupy or indent the cavity of the womb. (See blog about fibroids and fertility I)

Symptoms:

For women who have pressure symptoms those will definitely improve. For those with heavy periods the majority will improve however in about 5-10% of women symptoms will remain. With between 5-10% of women needing a further procedure within 5-10years. Again the need for another procedure will depend on whether there are residual fibroids or whether new fibroids have regrown.

Recurrence (new growth)

Once fibroids have been removed they cannot regrow but new ones may take their place.

The risk of this is anywhere between 5-40% depending on whether symptoms are taken into consideration or routine screening looking for fibroids after a myomectomy.

In one report women had an ultrasound scan to ensure all fibroids were removed 2 weeks after myomectomy and were then followed up for 3 years. 15% had new fibroids of 2cm or more at 3 year follow up.

The younger you are at time of operation the more likely it is that new ones will grow. The more fibroids there are at operation the more likely it is that new ones will develop. If only one fibroid is removed the quoted risk is 10% within 10 years. If many fibroids are removed this increases to about 25-30%.

New fibroid growth is not more common after laparoscopic compared to traditional open myomectomy. In one scientific study 81 women were randomized to either open or laparoscopic myomectomy and were followed up with ultrasound for nearly three and a half years there was no significant difference in new fibroid growth (27% vs. 23%)

If women are lucky enough to get pregnant they are less likely to have growth of new fibroids. One study found that at 10 years only 15% of women who had been pregnant had fibroids whereas nearly 30% of those who had not been pregnant had fibroids.

Sometimes the use of medication (GnrH) to shrink the fibroids prior to surgery may increase the risk of fibroids being missed at surgery. One report showed that only 13% of women had fibroids left behind without therapy whereas 63% who had GnrHa therapy had fibroids left behind.

If you do decide to have a myomectomy and plan on adding to your family this is best done sooner rather than later because

1. Fertility decreases with increasing age particularly after the age of 35years
2. There is the risk of growing new fibroids and the risk that symptoms may return. Should this be the case once family is complete more radical measures can be used to treat the fibroids

As a UK gynaecologist and obstetrician I say to my patients who have fibroids, that the majority of women who have fibroids will get pregnant with no problem, and the majority of women who have fibroids will see the pregnancy through with no problems.
However the diagnosis of fibroids may in itself be a “wake up” call as apart from causing symptoms of heavy periods and symptoms relating to pressure on the bladder and bowel they can in some women be responsible for difficulty in getting pregnant and problems during pregnancy. So if women are diagnosed with fibroids they would want to consider their fertility options sooner rather than later. The “magic” age after which fertility declines even in the absence of fibroids is 35 years.

Because of the difficulty in conducting fibroid research and the paucity of comparable papers in medical literature, sometimes quantification of the risk for the individual patient is difficult as is the ability of women to search literature for information and to match their individual circumstance.

As a general rule the problems fibroids cause depends on their location and their relationship to the uterine cavity. The fibroids that have been implicated in the reduction of fertility are those that occupy or distort the cavity of the uterus (submucous fibroids). Those that are in the muscle or on the outside of the uterus can impair fertility but have a less direct effect. They may have a mechanical effect when they obstruct the fallopian tubes (where the fertilized egg needs to pass through to reach the uterine cavity).

What the literature does say is that when we compare women with submucous fibroids with women with infertility without fibroids those with fibroids have a significantly lower clinical pregnancy rate, implantation rate, ongoing pregnancy rate and live birth rate.

High quality medical studies also demonstrate that when these fibroids are removed pregnancy rates increase. In an Italian study of 108 women over a mean period of 41 months pregnancy rates were improved by 49% for type-0 fibroids, 36% for type-I, and 33% for type-II submucous fibroids. In another study where some women were treated for their submucous fibroids and some were left alone. In those left alone the pregnancy rate was only 28% compared with 63% in those that had their fibroids removed.

Women with these submucous fibroids also have a higher spontaneous miscarriage rate and this miscarriage risk disappears when these fibroids are resected.

P.S: If you have a question about this post, please leave a comment or share with your friends!

You can read the second part of this post here: CLICK

Video showing hysteroscopic resection of submucous fibroid

This is the second part of my post: Do fibroids forbid fertility. 

Submucous fibroids can cause infertility, increase chances of miscarriage and complicate pregnancy.

Surgery is not always necessary for submucous fibroids, but for those implicated in infertility there is no rationale or evidence for medical management (treatment other than surgery)

Medical management involves the use of hormones. The only place for medical management for these fibroids is to shrink them before surgery. Shrinking the fibroids may make the operation easier for the surgeon and reduce the risk of some complications.

Sometimes if a woman is anaemic, hormones may be necessary to stop menstrual bleeding in order to improve the blood count in conjunction with iron therapy to prepare and optimize the body for surgery.

Most submucous fibroids causing infertility are removed by means of Hysteroscopic resection.

Hysteroscopic resection is where a small telescope (hysteroscope) is introduced into the uterine cavity. Attached to the hysteroscope is a wire loop, which is in turn attached to a high-energy electrical source. The instruments act like a “cheese wire” and allow the fibroids to be removed in a number of strips. Though it is possible to perform the procedure under local anaesthetic for small fibroids the majority require a general anaesthetic.

Factors that would influence my approach to the management of these fibroids would include the number of fibroids, the exact relationship of the fibroid to the uterine cavity and the size of the fibroid. As a general rule Hysteroscopic surgery is performed for no more than 3 fibroids with the largest being 5cm or less.

For larger submucous or deeper-seated submucous fibroids a 2-stage procedure may be necessary. In fact the deeper the fibroid is into the muscle of the uterus the more likely it will require more treatment. Only 9.7% of women with normal sized womb and no more than 2 submucous fibroids may need additional surgery, where as 35% of women will require additional surgery if the womb is enlarged and there are more than 3 submucous fibroids.

More recently especially for larger submucous fibroids and multiple submucous fibroids I use the laparoscopic approach. This is in keeping with recent literature that suggests this approach may have an advantage over Hysteroscopic surgery.

The theory behind this is that if a large area of the lining of the womb is removed with the Hysteroscopic procedure this may in it impair fertility.


P.S: If you have a question about this post, please leave a comment or share with your friends!

Just because fibroids are there does not mean they need to be removed.

The only reason to remove fibroids is to do away with the symptoms they cause and not necessarily the fibroids themselves.

Removal of fibroids will improve:

Symptoms of Heavy bleeding

Will improve fertility and

Relieve pressure.

Once upon a time an open myomectomy was the only method of treatment of fibroids but with increasing technological advancement and skill laparoscopic myomectomy is now available to most women.

As far as surgical removal of fibroids is concerned the laparoscopic myomectomy procedure should be the operation of choice and the gold standard. And the only limitation for the procedure should be if women do not meet set down criteria.

There is no agreement on what these criteria should be but before undergoing treatment for fibroids women should ask their doctor what their individual audit figures are:

How many fibroid operations has the surgeon performed?

What criteria does the surgeon set for open or laparoscopic myomectomy?

What are the surgeon’s conversion rates?

Women should then be able to compare these rates with what is reported in medical literature and make an individualized choice with her chosen surgeon.

In My practice the majority of women have a laparoscopic or Hysteroscopic myomectomy but not everyone. I feel that each fibroid operation should match the desires of the patient as well as improve their symptoms and improve fertility with the least chance of complications and the least chance of fibroid regrowth.

Kurt Semm one of the leading innovators of his time is credited as performing the first laparoscopic myomectomy in the 1970s

Since then laparoscopic myomectomy has become a mainstay treatment for selected women with uterine fibroids, with its proven advantages as a minimal access surgical technique.

Women require less pain relief. In most cases it takes longer to perform than open surgery but women t return to normal activities quicker. It is associated with less blood loss, and less adhesion formation (formation of scar tissue).

Factors limiting the availability of this therapy to most women is surgeon training and skill but having said that it is not the operation of choice for all. But where feasible it should be offered.

Traditionally laparoscopic myomectomy used to be limited to women with fibroids of 5cm or less, ideally the fibroids would have been subserous or intramural and not more than 3 in number.

With increasing technological advancement it is now possible to manage deep intramural or submucous fibroids laparoscopically. In fact in medical literature there are reports of fibroids of up to 15cm being removed laparoscopically.

The advantages of laparoscopic surgery to open surgery for women with fibroids includes:

Less Adhesion formation:

Adhesions are defined as scar tissue that results from the body healing itself. Tissues that are in proximity to each other during the healing process tend to stick together.

More than 90% of women who have myomectomy will develop adhesions. In 30% of these women they may be significant and lead to intestinal obstruction, chronic pain. If the adhesions involve the fallopian tubes or distort the pelvic anatomy they can lead to infertility

Laparoscopic surgery for the treatment of fibroids decreases adhesion formation by half and the adhesions tend to be less dense and less significant.

Less Blood loss:

Myomectomy is potentially a very bloody operation. This of course depends on the number and the location of fibroids. The greater the number of fibroids and the deeper the fibroids the greater the bleeding.

In my personal series there is about a 1:50 risk of needing a blood transfusion. With open surgery the risk can be as high as 1:20

Hospital stay:
After laparoscopic myomectomy the majority of women stay in hospital for 1-2 days
Return to normal activity
Recovery after any sort of surgery depends on the individual level of fitness and health before surgery.

Depending on the number of fibroids removed and the difficulty of the procedure the majority of women are able to return to 50-75% of their normal activity within 1-2 weeks. Women who work from home should be able to do this within 2 weeks.

By the 4th week women should be able to return to most of the activities they used to enjoy before surgery and by 6 weeks they should be able to return to the Gym.

After open surgery the above figures are usually doubled.

Educational video depicting actual surgery for a fibroid located on the posterior aspect of the uterus (video contains actual surgery)

The best way to recover from any gynaecological surgery is to be the fittest you can be before you have surgery.

A good life style will help recovery. Healthy eating, adequate rest, exercise cannot be overemphasized. optimisation of weight for women who are over weight or obese, stabilisation of raised blood pressure and diabetes is also key for those who suffer from these medical illnesses.

A number of women with fibroids will be anaemic prior to surgery, for this group of women it is important that blood level are optimized most often with iron supplements.

For women who have had a laparoscopic myomectomy, recovery will depend on the extent of surgery. but as a general rule most women would be able to do at least 75% of what they are used to within 2-3 weeks of surgery.

Unless there is a contra-indication all women are given Thromboprophylaxis (to prevent blood clots forming on the legs or lungs.. which can be a potentially life threatening condition). This is in the form of special stockings and injections under the skin. 

The majority of women who have laparoscopic myomectomy are discharged within a day or two of surgery.

You may feel tired for the first few days after surgery and find yourself napping a lot. This is because your body is concentrating on healing itself

Mobility:
On arrival home complete immobility is not advised as this increases the risk of Pneumonia and thrombosis (blood clots on the legs or lungs). Some women may be advised to continue using their stockings for a week or tow until they are completely mobile. It is OK to “potter” about the house but do not use a kettle or any other such utensil for the first few days.

Painkillers

You will be discharged home with painkillers. After a laparoscopic myomectomy the pain is supposed to get better day-by-day. The advice is to use as prescribed for the first 2-3 days then take them as required. Depending on the strength of this medication they will be advised not to operate machinery and if the medication contains “opiates” strong painkillers they may be advised not to use a hot kettle.

It is OK to climb stairs within a few days as long as accompanied. By the end of the first week following surgery you should be able to do this by yourself.

Wound Care: 

The small incisions are usually closed with absorbable sutures, these fall out within a week or two. If you find them uncomfortable you can visit your GP to have them removed. If non-absorbable sutures are used they are usually removed within a week.

On discharge from hospital you may be given some water resistant covers to cover the wounds when you have a shower or if the suture ends rub against your clothing.

After a few days the wounds are best left uncovered except in the shower.

Showers or Baths.

It is OK to have a shower the day after surgery as long as you are supervised. You will need to cover the wounds with water resistant covers until the sutures fall out.

You are best off not sitting in the bath until the sutures fall out, so you are better off taking showers instead.

Lifting: 

It is important not to lift heavy objects immediately after major surgery. This includes lifting children as is often tempting. Hovering also works the muscles of the abdomen and pelvic floor it is important not to under take this activity for the first 4 weeks

Driving 

May take up to 2 weeks after a laparoscopic hysterectomy; you need to be free from the effects of painkillers. The advice is that if you are able to sit in a car that does an emergency stop without any discomfort. Other things you should be able to do before you drive are:

Be able to sit in the car comfortably and work the controls

Be able to wear the seatbelt comfortably

Be able to make an emergency stop

Be able to comfortably look over your shoulder to manoeuvre.

Bleeding: 

After a myomectomy there may be vaginal bleeding for up to 10 days if it lasts longer consult a health care worker

Menstrual periods:

After a myomectomy the first few periods may be different from what the experience was before surgery.

For some women the periods may be heavier and more painful for the first few months but they tend to settle within about 3 months.

Returning to work

When you return to work will depend on the type of work you do. If your work is computer based it is possible to work from home if required within a few days of surgery. The majority of women will be able to return to work within 2-4 weeks for some it may take a little longer.

For the traditional abdominal open Myomectomy, recovery can somewhat be delayed as because as well as internal healing the outside scar also needs time to heal. Hospital stay is longer and can take up to 4-5 days and recovery takes about 6 weeks

Size:

Size alone should never be an indication for surgery for fibroids. Historically when fibroids were about 14 weeks size it was advised that women have surgery but these days in the absence of symptoms of fibroids; heavy bleeding, pressure symptoms or infertility there is no reason to have an operation just because of size.

Fear of cancer:

The risk of cancer developing from a fibroid is very low. Different studies give different estimates but less than 1:1000 (0.01%) women who are admitted and have surgery for fibroids are found to have cancer.

Leiomyosarcoma is the type of cancer associated with fibroids. It actually develops from the muscle of the womb rather than the fibroid itself. Though leiomyosarcomas have been reported in young women it is commoner in women over the age of 60 i.e. in the menopausal years

Does rapidly growing fibroids mean cancer?

Rapidly growing fibroids does not mean cancer in a review of over 1322 women, 371 of who were operated on for rapidly growing fibroids none were found to have cancer.

Despite this evidence it is best if the older woman does have rapidly growing fibroids she should be investigated.

It must be said however that even though it is possible to diagnose Leiomyosarcoma before operation by means of ultrasound and MRI, very few are diagnosed before surgery.

The majority are diagnosed by pathology studies after the uterus or fibroids have been removed.

And life expectancy after the diagnosis of Leiomyosarcoma is not very good.

Therefore in the older woman who does have rapidly growing fibroids, investigations should be carried out and if inconclusive a hysterectomy is usually the operation of choice.