Tuesday, 5 February 2008

Adenomyosis

This has just been published in Nursing Standard (this week's edition) so has to go into the portfolio. Everything you never wanted to know about painful periods..

Adenomyosis
• Symptoms include very heavy bleeding and severe cramps
• Is aggravated by the cyclical pattern, so the key is to stop the menstrual cycle
• Occurs mostly in women over 35, many who have undergone uterine surgery, e.g. fibroid removal or Caesarian
• There is no known cause
• The condition worsens with age, but tends to right itself after menopause

One in ten women suffer unbearably painful periods, have to miss work, cancel holidays and even become housebound for several days every month. The cause of this could be adenomyosis, a condition of the uterus that most women have never heard of.

With adenomyosis, the tissue that lines the uterus (the endometrium) grows into the muscle of the uterus. This means that the blood and endometrial cells that usually leave the uterus with a period every month are trapped deep within the muscle, causing severe cramping and very heavy bleeding.

This condition tends to right itself after the menopause, but those who suffer from it find that the knife-like cramps and heavy bleeding worsen as they get older, and many women become anaemic through loss of blood.

The symptoms include:-

- very heavy and prolonged bleeding that can include passing blood clots;
- severe cramping during menstruation that increases with age;
- bleeding in between periods;
- painful intercourse;
- if the condition is advanced, it can cause infertility.

However, these signs can be similar to those suffering endometriosis or fibroids, so careful examination is necessary to detect the exact nature of the condition.

“There is little awareness of adenomyosis because, as it is located within the muscle layer, it is difficult to diagnose,” says Dr Sarah Gray, GP Specialist in Women’s Health. “The symptoms are pain associated with the onset of bleeding, so I can pick it up from a pattern of symptoms. If all other tests come back negative, I assume the problem is adenomyosis.”

The statistics are sparse, because the problem has, until fairly recently, only been diagnosed by examining the tissues of women who have had a hysterectomy. Approximately 10% have been found to have adenomyosis, but it is believed to be present in about 5% of all women of a fertile age, and many of these are unaware that they have the condition. It has been found that 12% of women with this disease have also had endometriosis.

Diagnosis can be by means of a vaginal examination which often shows a tender and/or enlarged uterus. Now MRI scans and ultrasound are used by clinical professionals to detect the condition, but none of these definitely prove that adenomyosis is present. The only accurate diagnostic method is still after hysterectomy.

While some GPs believe that hysterectomy is the best way to treat adenomyosis, most women prefer not to have such invasive surgery. For women who have had children or do not wish to conceive, the Mirena coil has proved extremely effective. This intrauterine device works by releasing the hormone progestogen directly into the uterus. This thins the uterus lining, so there will be less, or no, bleeding every month.

“The Mirena coil is 94% effective,’ said Una Stevens, a nurse for the charity Woman’s Health Concern, “but obviously it doesn’t suit everyone. For the first few months following insertion, heavy bleeding can occur, but this can be counterbalanced by taking a progesterone tablet such as Noresthisterone, which will settle the uterus and reduce blood loss.”

Other pharmaceutical treatments include a type of hormonal contraceptive commonly known as the 'mini pill' or progestogen-only pill (POP). It contains the active ingredient desogestrel, which is a synthetic progestogen, similar to the natural progestogens produced by the body. This breaks the hormonal cycle, thereby eliminating any bleeding and cramps.

Gonadoptrophin releasing hormone (GnRH) treatments lower the levels of oestrogen in the body which lightens periods and therefore reduces symptoms, and can reduce the degree of the adenomyosis. However, these treatments cannot be taken for long without a break, and can have adverse side effects such as headaches, depression and weight gain.

“For patients wishing to conceive, I would suppress the cycle until they did want to get pregnant,” says Dr Gray. “That means taking the contraceptive pill continuously – without a gap. Adenomyosis is aggravated by anything cyclical, so the key is stopping the cycle.”

Some male GPs can be dismissive about painful or heavy periods, meaning that many women think nothing can be done, so it important that nurses have a knowledge and understanding of this condition.

“It’s all to do with pattern recognition,” says Dr Gray. “Maybe some GPs don’t listen hard enough and don’t pick up the problem.”

So if you have been having very heavy or painful periods, it is important to keep a record of your periods over the last six months and go to your GP. In addition, Women’s Health Concern (details below) have a team of medical experts available to give advice on gynaecological and menopausal matters.

“Adenomyosis seems to have been put on the back burner,” said Una Stevens. “Fibroids are identified, and endometriosis, but we haven’t had any calls about adenomyosis on our helpline. People don’t seem to know what it is, which is strange. It needs to be highlighted.”

Many women suffer unknowingly from adenomyosis every month. With more information and wider recognition of the condition, periods needn’t ruin your life.



Both Dr Sarah Gray and Una Stevens are associated with Women’s Health Concern
Whitehall House
41 Whitehall
LONDON SW1A 2BY
www.womens-health-concern.org
General Enquiries info@womens-health-concern.org
020 7451 1377
Helpline 0845 123 2319 local rate call Mon-Fri 10am – 1pm

British Menopause Society
The-bms.org

Nursing Standard, 6th February 2008

36 comments:

Rebecca Taunton said...

Congratulations on the publishing of your article FP! Well done!

RT

BreadBox said...

What RT said! Great job, FP!
How are you coping these days? Has the coil been helping your symptoms?

N.

Flowerpot said...

RT - thanks! Though typically they haven't sent me a copy and the latest edition isnt in Smiths!

Flowerpot said...

Yes thanks Breadbox. It's done teh trick for me - and what a relief!

Miss Understood said...

Great article, FP. You should be very proud...not just for getting it published, but for highlighting such an awful condition. Well done!

Akelamalu said...

Congrats on getting your article published. Glad to hear you've got some relief. I'm thankful I've had me bits removed! :(

wakeupandsmellthecoffee said...

Very informative. I hope many women get to read it. It could change their lives.

The Rotten Correspondent said...

Very, very nice, flowerpot. Lovely article. And very informative.

Congratulations!

Flowerpot said...

MissU - thanks. That's the purpose - to get more people aware of the condition.

Flowerpot said...

Ak - Well that alternative was having bits removed but I'd rather not if its not necessary!

wakeup - yes I hope so.

RC - thanks. It took a lot of medical research which isnt my forte but it's done now!

Dr. Harold said...

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Sarah said...

So far this is the most concise article I've come across regarding Adenomyosis, so thank you for that. I was recently 'diagnosed' after a laparoscopy showed no endometriosis whatsoever, and although I've had three children, and don't plan on any more, the idea of a hysterectomy at age 31 is daunting to say the least. As far as the Mirena goes however, it has been noted that I seem to have a bad reaction to synthetic progesterone, following every form of it I've tried (pill, mini-pill, injection, nuvaring and Mirena), there was always some kind of bad side-effect, ranging from chest pains, arm and leg numbness, severe depression and mood swings which had to be counteracted with an anti-depressant.
My adenomyosis symptoms have left me unable to work, drive and live a normal life, I just hope that hysterectomy will help me to regain these abilities, and soon.

Thanks again FP :)

Ann Marie Bennett said...
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Flowerpot said...

That's really interesting, Sarah and Ann Marie, though I'm so sorry you have both had such a terrible time with it. I have been trying to interest the national media in the subject - the Times might well run another of my pieces on adenomyosis in hteir body and soul section. For some reason, most women's magazines just don't want to talk about it which makes me mad!

Ann Marie Bennett said...
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Ann Marie Bennett said...
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Flowerpot said...
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cheekylittlegirl said...

Hi I came across this while researching adenomyosis. I have recently bee diagnosed and am only 27. I am quite scared as you would imagine as to what is going to happen next. So it's been helpful to see insight from other women experiencing this horrible thing too. My husband and I want to try for 1 more baby but still have to see the specialist to see if this is possible or not. But you guys have done a great job with this and I think we need to get this thing recognised more as I had no idea what it was either. I thought ok so I have something that can be treated with just some medication, and then I started looking into what it was and just broke down into tears. It's a bit easier to deal with now but still difficult. Now it's just waiting to see what they'll do with me. Will keep you guys posted.

cheekylittlegirl said...

Hi I came across this while researching adenomyosis. I have recently bee diagnosed and am only 27. I am quite scared as you would imagine as to what is going to happen next. So it's been helpful to see insight from other women experiencing this horrible thing too. My husband and I want to try for 1 more baby but still have to see the specialist to see if this is possible or not. But you guys have done a great job with this and I think we need to get this thing recognised more as I had no idea what it was either. I thought ok so I have something that can be treated with just some medication, and then I started looking into what it was and just broke down into tears. It's a bit easier to deal with now but still difficult. Now it's just waiting to see what they'll do with me. Will keep you guys posted.

Flowerpot said...

Best of luck Cheeky - you are in a difficult situation but it's not impossible. Take care and good luck xx

cheekylittlegirl said...

Hey I'm back again, I finally got word today that I have my first specialist appointment on the 4th of March so hopefully I'll come out of there with something positive to tell anyway. Will let you know how I go, fingers crossed.
Rebecca

Flowerpot said...

Best of luck Rebecca. Keep me posted.

Kim said...

My Name is Kim, I live in Trinidad and Tobago (Caribbean)- I am 34 years old and was diagnosed almost 6 years ago with Adenomyosis. I was 28 years old. I was also diagnosed with PCOS.

I was wrongly diagnosed with fibroids through an ultrasound and subsequently had a myomectomy and the tissue was sent to Canada for biopsy. This is how I found out about the disease.

I have found that not many people know or understand the disease. My gynaecologist has been patient and understanding throughout the years and she and my other doctors (GP's) are always telling me to be positive when it comes to child bearing. My gynaecologist performed the surgery.

I however have noticed as you stated in your article that the pains have become more intense as I have gotten older. I also experience painful intercourse and heavy bleeding (with clots) and irregular bleeding, sometimes all month long.

Needless to say- this adversely affects my life.

I realize that there is more information on the disease now than when I found out 6 years ago. I have been to gynaecologists/obstetricians who were quite callous in the manner in which they approached the issue of infertility- one reason I stick to my current doctor.

I am happy that there is more information available as it serves as a form of support for a young woman with a relatively unknown disease.

Just to give an idea of my reproductive history- I was on estrogen based birth control pills for 8 years straight. It was when I stopped taking the pills - after the end of a long term relationship- that I realized that I had a growth of 5.2 cm in diameter, which resulted in the myomectomy.

I had terminated a pregnancy almost 10 years before that.

All my life I had painful periods, heavy bleeding, menstrual bowel changes and now as I am older severe migraines.

All during my teen years, and early adulthood- all doctors told me was that some women are unfortunate and that I just had to deal with it.

I advicate these sites to offer women all the information they need.

Thank you and please continue your work.

Sincerely,

Kim- 34 yr old

Flowerpot said...

Hi Kim, I'm so sorry to hear of everything you've been through but it does sound like you have a good doctor/gynae and i do hope they can help you. Take care and good luck.

Ann Marie Bennett said...
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Ann Marie Bennett said...
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Beatriz said...

thanks for your article! It has cheered me up no end, specially because you quote a nurse saying that the coil is 94% effective... I had mine fitted five months ago, and have only had two painful periods since; however my second one has just finished and has been cause for alarm, as I don't know whether it means the coil is not working... now I feel better.

Beatriz said...

oops, just one more thing: apparently periods don't need to be heavy. My period was only three days long and the last day with very little blood, was the worst one!
although I haven't been diagnosed - I only had a magnetic resonance and histeroscopy - the reason why the doctor thought what I have is adenomyosis is that the pain is not associated with more blood flow, and apparently that is typical of adenomyosis as well...

thanks
Beatriz

PS I'm 41 and was diagnosed age 40, had painful periods since age 20 or so - but suddenly the became horrendous after I turned 37 more or less. If the pain gets WORSE post 35 then it probably is not a good sign.

Sepia830 said...

I was recently diagnosed with Adenomyosis after complaining of heavy periods and pain for some months. Around the time this started, I also began experiencing a really bad pain behind my right knee, one that feels like a charlie horse. I am okay when I sit down but when I stand up the pain is excruciating!! I literally have to will myself to walk. An x-ray, ultrasound and MRI revealed no abnormalities with regard to my leg. I recently read a few Adenomyosis testimonies where sufferers also complained of leg pain. Has anyone here experienced this? I have an appointment next month to see an GYN regarding a possible hysterectomy. Anything to stop this pain.

Sepia830 said...

I was recently diagnosed with Adenomyosis after complaining of heavy periods and pain for some months. Around the time this started, I also began experiencing a really bad pain behind my right knee, one that feels like a charlie horse. I am okay when I sit down but when I stand up the pain is excruciating!! I literally have to will myself to walk. An x-ray, ultrasound and MRI revealed no abnormalities with regard to my leg. I recently read a few Adenomyosis testimonies where sufferers also complained of leg pain. Has anyone here experienced this? I have an appointment next month to see an GYN regarding a possible hysterectomy. Anything to stop this pain.

Flowerpot said...

I'm really sorry to hear that Sepia. No I haven't heard of this before but I am no expert and can only write from my own experiences. I do hope you get some relief very soon.

cheeky girl said...

Ok well it's been 12 months since I was diagnosed and hubby and I have been seeing doctor after doctor as we have been trying to have another baby. I have been on clomid for over 6 months with no luck. I had a laparoscopy in June which revealed that I have pcos also. I am scheduled for surgery on the 31st of January for an ovarian diathermy to try and get my ovaries functioning properly again but I am losing hope that I will ever conceive again. I only started getting any of these problems after I had the implanon put in and now everything is spiralling out of control. I now have severe depression on top of everything. I think it is almost time to give up and say just take it all out :( will let you know how things progress after the next round of surgery.

Sepia830 said...

@Flowerpot Days....thanks for saying that. The GYN stated that he only knows Adenomyosis to affect the thigh area of the leg, yet since my original post I have found even more online posts to the contrary. I'm deciding now whether or not to have the hysterectomy. More research to do...

Flowerpot said...

Sepia - best of luck.

cheeky girl said...

Hi Guys, it's Rebecca here again. It's been almost 12 months since I last wrote in but since then a lot has happened. It turns out that all my problems seem to have come from having the implanon implant put in. I had a laparoscopy in May which showed that I hace PCOS on top of the adenomyosis, I also put on 30kg in 4 months and now have severe depression. I have been on clomid for 7 months with no luck at all and am now booked in for an ovarian diathermy on the 31st of January. So hopefully if that works I'll at least be able to lose some weight but the outcome of having another baby is not looking good so far unfortunately so I am trying to build a case against the manufacturers of implanon because it was never supposed to permanently stop me having kids. Hopefully something goes good soon because I don't know how much longer I can put up with the pain. Will keep everyone posted as to how the surgery and everything else goes. Rebecca xx

Flowerpot said...

Rebecca - I am so very sorry you are having such a bad time. Everything crossed for you. Take care x