My Experience of Endometriosis (My Experience Of Endometriosis)

Member Name: loveableukangel

Product:	My Experience Of Endometriosis
Date:	10/11/09 (23 review reads)
Rating:

Advantages: None

Disadvantages: Pain, Bleeding, Infertility

Ok for those of you who do not know what this condition is I will in my own words give you a brief discription of what this condition is. I will then give you an insight of how this condition has affected me, the battles and heartbreak I've endured.
Now Endometriosis is a gynaecological condition which is known to affect over 2million women in the UK alone yet it is still a very poorly understood condition which often leads to misdiagnosis in many women.

Now during a normal Menstrual cycle the Endometrial cells which line the womb break down and start to bleed leaving the body as what we know as our monthly period, but for women who suffer from endometriosis these cells shed,escaping through the Fallopian tubes and find themselves being deposited in other areas of the body rather than being expelled from the body. The most common places for these deposits to be found are the Ovaries, the Fallopian Tubes, The Bladder, Bowels, Uterus and the Pelvic Cavity although in more extreme cases can be found on the liver and lungs. These Cells then develop into Lesions and Cysts. Now the problem with this is that even though these cells are no longer within the womb they still react to our bodies monthly hormone changes so when the cells within the womb start to bleed and shed leaving our body as a period these deposited cells react in the same manner but unfortunately being within the womb cavity they have no way to leave the body.
Now this condition can affect women in very many different ways, some can have the condition and not know at all and others to the extent that life at times can feel like a major hurdle
.
Symptoms associated with this condition include:
Painful Ovulation
Severe Period Pain
Heavy Bleeding
Irregular Bleeding
Pelvic pain
Leg Pain
Back Pain
Nausea
Fatigue
Diarrhoea
Constipation
Swelling to the Abdomen
Painful Intercourse
and at worse Infertility.

Diagnosis of this condition can only be made through a procedure called a Laparoscopy, This is where your surgeon under a General anaesthetic will create 2 -3 small incisions (usually approximately a cm wide) to the abdomen and a small device is passed through to inflate the abdomen with Carbon Dioxide. Next a small camera will be passed into the abdomen in order for the surgeon to have a proper look around and identify whether or not there is any Endometriosis spread. The Use of the Carbon Dioxide makes this much easier to carry out as it allows a clearer view internally and means that the surgeon can move around organs to look deeper inside if the need be.

There are various treatments available out there but no cure and every woman I know who suffers from the condition has found that some treatments were more effective for them than others.

The most common routes of treatment can include:
Analgesics:
The use of Painkillers and Anti Inflammatory drugs are an effective way to treat the inflammation caused by the Endometriosis and to treat the pain associated with the condition but it does not go to the route of the problem.

Endometrial Ablation: This is the surgical removal of the Endometriosis cells via a Laparoscopy, It involves the burning away the endometrial cells, Although very effective to start off with these cells can still re develop over time.

Hormone Treatments:
Hormone treatments are designed to stop your body's natural production of Oestrogen which is known to encourage the endometriosis growth and spread within the body, by taking away this Oestrogen the body is tricked into a state of Menopause and the Menstrual cycles ceases.

IUCD (Intrauterine contraceptive device) Coil:
The insertion of a coil can help reduce your periods or completely stop them. The device is designed to release hormones directly into the womb, it decreases the growth of the endometrial tissue, thinning down the lining of the womb and eventually after time the cells start to die away. One advantage is the coil can remain in place for up to 5years.

The Combined Oral Contraceptive Pill:
The idea of the Pill is to stop your menstrual cycle each month therefore this reduces the amount of Oestrogen being produced by the body and decreased the growth of the endometrial tissue. There are many different combined pills available out there it's just finding the one which is suitable for you

Hysterectomy:
Hysterectomy for most women is the worst case scenario; this involves the complete removal of the womb and ovaries via surgery. This then completely stops the production of oestrogen within the body and the endometrial tissue dies away as it no longer has anything to keep it going.

Some consultants and nurses may also recommend other alternative and complimentary methods of treatment too, such as herbal remedies, Vitamins and Supplements, Acupuncture, Yoga, Meditation and

The Endo Diet:
It has been suggested that a change in diet can also benefit those who suffer from this condition, that by removing from your diet Wheat, Dairy and Red Meat dramatic improvements in people's endometriosis has been noted in studies carried out.

My personal Battle:

I had suffered from really erratic, painful periods from the age of 11 at first I just thought that this was normal but after months of extreme pain, heavy bleeding and missing a lot of school and many trips to the GP being given Painkillers and told it was probably Irritable Bowel Syndrome I was referred to my first Gynae consultant. At my first appointment in 1994 I explained all that had been going on since my first period and my consultant said that it sounded like Endometriosis and that he would like to perform a Diagnostic Laparoscopy to confirm this. Within six weeks I was being admitted had the procedure and his instincts were right it was Endo.I was there and then booked in for more surgery within 4weeks but this time around it was for ablation. After that my consultant decided that he would like me to go onto the pill but said that it could take a fair while to find the right combination for me as everyone reacts differently. Once that right combination was found (and that was a few) the Endometriosis seemed to be under control, No periods, No pain but in 1997 when I was 14 the bleeding started over and so did the pain.
Back to the Consultant and after another Laparoscopy and the discovery of more endometriosis spread it was suggested that I tried the Mirena Coil. Now this was a daunting thought of having a piece of plastic stuck up inside of me but the pain was that bad that I was willing to give anything a try and in 1998 I had one fitted. After my body finally accepted the coil and stopped trying to reject it I was in heaven, No periods what so ever, No Pain but unfortunately 3years on in 2001 when I was 17 the coil decided to dislodge itself, it caused a large infection and I was in hospital for 8days and had to have it surgically removed.
After the removal of the coil and 3years of heaven the Endo seemed to spiral out of control, No sooner would I go in for ablation the Endo would start to re appear, the pain was getting un bearable and the bleeding so heavy, I was bleeding so heavily that I was anaemic and having to take Iron tablets and each trip to the GPs was just seeing an increase in my painkiller dosage.

Between 2003 - 2004 the condition was unreal, nothing seemed to want to work, I was continuously being admitted into hospital from collapsing because of the Pain or the Anaemia and after another Laparoscopy to see how severe the spread was and a review from the pain management team I found myself being discharged on Morphine and Oromorph. I was on these for approx 10months and I was not on this planet, I could sleep upto18 hours a day, I was a zombie.

In 2005 I discovered that I had fallen pregnant, a shock to myself as I was originally told by my first consultant that the chances of ever falling pregnant were very slim. Now These 9months were Bliss, No painful periods, No heavy bleeding and I was also told that the chances of the Endo ever returning was really slim and that by falling pregnant this could have been my cure but as soon as I had my son in 2006 the vicious circle started up again, the Heavy bleeding, the erratic bleeding . I felt like I was back at square one again. I was put back onto different pills but they had no affect what so ever, I was bleeding through the pill no matter what and the pain was becoming unbearable then at the end of 2006 I discovered that I was pregnant again and it all disappeared again, this was until 6weeks into the pregnancy when I was rushed into hospital with an Ectopic Pregnancy, The Consultant who dealt with me explained that the fertilised egg had got caught up in my left Fallopian tube instead of moving down into the womb and that as the cells continued to multiply and grow it caused the Fallopian tube to rupture and I started to bleed internally into my abdomen, and that if they had not operated when they did and removed the damaged section of the fallopian tube I may not have survived. It was also later explained that the probable cause of this Ectopic pregnancy was scarring from the endometriosis within the fallopian tubes and that's why the Fertilised egg got caught up in the first place. I was absolutely distraught, to know that the condition which had been causing me so much pain for so long was now causing me such heartache. It also hurt at the thought that as well as the Endo possibly causing problems in conceiving in the future again that I was now down a fallopian tube too.

Since then I have been struggling a never ending battle, In 2007 I had some more surgery for ablation as the Endo had spread again but like previous attempts the Endo just came back. Over the past two years I have since tried Hormone patches, the implant, Injections, the induced menopause for 6months, Vitamins and Supplements and the Endo Diet but all to no Avail. My periods have got so erratic that I can have anything between 3 to 6 a month and the Pain is still there on a daily basis.

In July 2009 at the age of 25 under a new consultant (as mine of 14years decided to leave my local hospital to go private- was not impressed) it was decided that I would give the Mirena Coil another try as last time it was initially successful it's just the fact it dislodged and got embedded in the surrounding tissue.
I've now had it in just over 3months, I'm still having to take painkillers (Tramadol Hydrochloride) on a daily basis because it's not completely stopped the bleeding this time around and I still getting erratic bleeding and the pain is still there but not as bad. I still try to carry on as usual, as hard as that is at times. I know I'm usually drugged up on painkillers on a daily basis but I do try to get on for my little boy and my Fiancé. I really don't know what I would do without him, and since having the coil fitted the moods and hormones I get along with other side effects which he has to deal with. I'm very lucky indeed.

This truly is not a nice condition and I sympathise with any sufferers out there, If you're not a sufferer this is not just period pain, It's a recognised condition around the world and if you are someone who is relating to anything that I have written in this but keep being fobbed off by your GP then please keep being persistent, I was misdiagnosed so many times before I finally got referred to a gynae consultant and got the proper diagnosis. After all who else knows our bodies better than ourselves? Another reason for getting this diagnosed as soon as possible is that this can also affect your fertility, that the more severe it is the more damage may be being caused inside and could cause you problems in the future. I've been extremely lucky in the fact I have a little boy but others are not as lucky.

Summary: A personaly review and Insight of the gynae condition Endometriosis