The following information has been gathered since my diagnosis with Endometriosis. I do not claim to be an expert medical or otherwise. I have tried to keep the information simple and it is basically a fellow sufferer’s view of what Endometriosis is all about. I hope you find it useful.
Trying to understand Endometriosis can take years of research and still the answers to all the questions are not clear. It is a distressing and painful disease and is also very difficult to treat.
The Endometrium is the inside lining of the womb, Endometriosis is a problem connected with this. Tissue similar to the lining of the womb is found growing outside the womb, usually in the pelvis, although it can be found almost anywhere in the body. Some of the less common and relatively rare sites include the lungs, kidneys, liver, nose, ears, eye, joints and muscles in the limbs. It can also be found in scars from previous operations.
The most common places are:
Ligaments supporting the womb
Pouch of Douglas (behind the uterus),
This tissue then responds to the normal hormone cycle (in the same way as the
lining of the womb).
During menstruation it can bleed into the surrounding tissue, because this blood cannot escape it can result in a build up of inflammation and scaring. This inflammation can cause various organs such as the bowel or bladder and other pelvic organs to become matted together in a web of scar tissue known as adhesions. These can cause chronic pain and may interfere with the normal function of the bowel, bladder, or ovaries and fallopian tubes, and can sometimes cause infertility.
Cysts can also form on the ovaries, some of these are what's known as 'functional'
cysts and may not cause a problem, but another form is known as 'Endometrioma'
or Chocolate cyst', If these cysts rupture they can cause intense pain and spill
there contents inside the pelvic cavity, this can then lead to more adhesions.
There have been several opinions written on this, some say it may be genetic, some say not. The environment, diet, smoking, the position of the uterus, delayed motherhood, and stress, have all been suggested and argued over by the experts, from research I have done it seems almost anyone can have it, documented cases range from ages 9 to 78. Some experts are now beginning to think that there may be a hereditary link or a gene that makes some people more prone to the condition.
The medical experts are still unsure of this. There are several theories,
1 Retrograde Menstruation.
During menstruation instead of leaving the body some of the blood can flow backwards into the pelvis via the fallopian tubes, where it can attach itself to another surface.
2 Blood / Lymph Circulation theory
Endometrial cells are carried in the blood or lymph circulation to other areas of the body to sites outside the uterus.
3 Immune system Theory
The immune system is not working as it should, allowing these rogue cells to grow where they shouldn't instead of recognising & removing them.
It has been said that a healthy immune system may help to prevent normal cells from implanting in an abnormal site. Therefore the development of Endometriosis may represent a deficiency within the immune system. Trying to explain the immune system is a little beyond me, but I suppose we can all try and lead a healthy lifestyle, some gentle exercise, avoiding stress etc and hope it helps.
There can be so many symptoms but top of the list for most is PAIN. Chronic pelvic pain during periods, or ovulation (mid cycle) or for the really unlucky ones pain at any time or all of the time. It is not the sort of pain that can be taken away with a couple of paracetamol. Pelvic pain can be on just one side, both, or in the middle regardless of where the Endometriosis is. For example if the Endometriosis is on the left ovary pain can be felt on the right, there are no set rules with this disease. A lot of pain doesn't necessarily mean you have a lot of Endometriosis, Women with small patches can have more severe pain than those with large patches, it is not understood why.
Common symptoms include:
Severe Period Pain
Bleeding from rectum
Heavy or Irregular Bleeding,
Pain During Urination,
Heavy periods are thought to be a sign of Endometriosis although this is not always the case. Women with medium to light flow and believe it or not pain free periods, can still have Endometriosis. It must be said that not everyone gets pain, to me that makes the disease even more difficult to understand. Many women find while having Endometriosis some psychological problems may occur, Is it any wonder with all this to cope with. The loneliness and isolation that can be brought on by having this disease can sometimes be hard to bear. There is lots of support around no one should have to suffer alone.
There are no symptoms that definitely suggest a diagnosis of Endometriosis and nothing else. Not all doctors are up to date when it comes to endometriosis and in some cases it is disregarded even if it has been thought of. Many women suffer with several of the symptoms and put it down as just being part of normal period problems. ( or that is what they are told )
It is important to talk to your doctor and give him all the facts however embarrassing it might be. Some doctors may perform an internal examination or suggest an ultrasound scan, or blood test, but the only sure way of diagnosing Endometriosis is by having a laparoscopy, although having said that if the skill or experience of the surgeon is not as it should be then it can occasionally still be missed.
The operation is done under a general anaesthetic and usually takes less than 30 mins. A small device is passed through the abdomen just below the navel. Carbon Dioxide Gas is pumped in to inflate the cavity, this makes it easier for the surgeon to see and move various organs around. A laparascope (a small camera) is then inserted just below the navel. Another small incision is then made above the pubic bone for the other instruments that may be used. Any adhesions found may be divided to give a better view, this may also relieve some of the pain. Every organ in view should be thoroughly checked including the bowel. If cysts are found they may be drained or removed. When the surgeon is satisfied, as much gas as possible is removed and the two wounds are closed with a stitch or two.
After the operation there will be some discomfort, some can be felt in the chest and across the shoulders, this is due to some remaining gas and will pass in hours or can take a few days. Pain from the abdominal area can vary from a little to a lot, depending on what has been done and your own personal tolerance to pain. There may be some vaginal bleeding for a few days, this is normal. Some women are up and about in a day or two others can take a week or two everyone is different.
Laparotomy involves opening up the abdominal cavity, it is used when endometriosis is so widespread that it can't be handled through the tiny incision used in laparoscopic surgery. Recovery is also slower and more painful, and there is a greater danger of post-op infection.
Lesions have been described as looking like:
Bruised like areas
Powder burn spots
Blue, red, or chocolate cysts
Raised red, translucent, white or red/ blue deposits.
No treatment can absolutely prevent endometriosis from re-appearing, as yet there is no definitive cure, only treatments that may help manage the disease..
If periods are stopped completely for an amount of time, the endometriosis may regress for a time.
These treatments may vary depending on which country you live in.
The Combined Oral Contraceptive Pill can be given and taken continuously for a period of 4-6 months, this can help relieve painful periods and other pelvic pain in some women and is generally given for what is classed as mild cases of Endometriosis.
Some other drugs include Synarel, Lupron, Zoladex, and Danazol, they are given either by injection/implant or in the form of a nasal spray. These medications moderate or suppress ovulation (the ripening and release of an egg for fertilization) to create a temporary pseudo-menopause, they can also cause many side effects. including:
Lowered sex drive
Increased body hair
You may think these symptoms are worse than you had before but in some cases these drugs can take away the pain which makes it worth while putting up with the side effects, luckily not everyone gets them all.
Some other side effects (experienced while on Zoladex) that have been mentioned by sufferers but maybe not widely recognised by the medical profession may include:
uncontrollable mood swings
the inability to make decisions / to feel emotions
These drugs do not cure Endometriosis but they can shrink the endo implants down for a while.
Destroying the Endometrial Implants:
The surgeon may destroy endometrial implants or adhesions by various methods:
Excision - removal of implants by cutting.
Implants and adhesions may be vaporized, cauterized, or coagulated using electrical or laser devices.
An ovary affected by endometriosis may be treated by surgically removing the cysts or draining the cysts and destroying the lining using electro- or laser surgery.
For more information on these techniques please go to the links page.
This is sometimes needed or chosen by women who have severe Endometriosis and
other treatments have not worked. In some cases symptoms can return after surgery,
especially if the disease is present in other areas apart from those removed.
In my opinion a hysterectomy should be a last resort, not the first as unfortunately some of the medical profession believe, it should be the endo that is removed rather than the organs.
If you want to find out more about the ins and outs of endo in more detail there are lots of good links on the links page.
This may be of no use to some of you but if it helps one person then it is
People react differently to painkillers and what suits me may not suit others, and side effects I had may not happen to you, it's trial and error to find which ones suit you.
Co-Codamol and Co-Dydramol (Paracetamol and Codeine) initially helped with the pain but made me feel like I was on another planet (not sure which one though).
Ponstan had the same effect. Mefenamic Acid worked for about a month and then had no effect at all. Voltrol (pill form) works sometimes but seems to take a couple of days to get the full effect.
Ibuprofen 600mg and 2 paracetamol work if the pain is not really bad. I have minimal side effects although you do have to be careful with these as they have been known to occasionally cause internal bleeding, they should not be taken on an empty stomach.
On my worst days especially during a period I use 100mg Voltrol suppositories
at night, not very pleasant to use but they get me through the night.
(Check with your own doctor before taking any of these drugs or anything in such high doses.)
I use a Tens machine but don't find it useful during a period as the pain is so widespread and I can't bear anything on my stomach at that time. I find it great for pain in one particular area.
If all else fails then it's of to bed with the hot water bottle. I get a lot of pain on my right side (ovary area) which goes straight through to the back like someone sticking a knife in and twisting it, gentle massage on the back can help to relieve this, It helps if you've got a nice hubbie to do it for you. Check with the experts if you intend to use essential oils for this.
I take Evening Primrose Oil 1000mg a day which can take 2-3 months to get into your system, it's great for breast pain and may keep your hormone levels a little more balanced. I take 400mg of vit e, to help with hot flushes, & 1000mg calcium with vit D for bones,
Stress plays it's part too, I find if I am stressed or over tired the pain can get worse. Eat well, sleep well, and de-stress, it all helps with the immune system.
So, what do we have.. a disease that women get, no one knows when, no one knows
how and no one knows why.
No known prevention no known cure, a feeling of being totally alone, no one really understanding apart from a fellow sufferer, chronic pain and misery for most.
We all have really bad days, we pick ourselves up put a smile on our faces and try desperately to lead a normal life. No one can fight this battle for us. Get help and support wherever and however you can, there will be times when you need it. Be honest with friends and family about how you feel.
We can't give up, we can't let this disease beat us. Awareness is growing throughout the UK, all be it slowly, if we all do a little to raise awareness Endometriosis will no longer be the silent, hidden disease it has been for so long.
The internet is a great source of information and support, keep surfing.
Be strong and good luck to you all.
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