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Adenomyosis Advice On-line Support Page

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Ask the experts

Posted on September 28, 2011 at 11:04 AM
Please feel free to ask any questions here, and  hopefully these will  be noted, responded to and looked into by clinicians who may visit the page as part of any research into the condition. Thank you. 

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226 Comments

Reply Danielle
3:26 PM on October 5, 2011 
Further to the recent Study of Women's Health
detailing the global impact of endometriosis,( http://www.endometriosisfoundation.org/gswh.php ) I would be very interested in really finding out how much adenomyosis affects women across the world. This information is so crucial in calculating how financially worthwhile quicker diagnosis and treatment would be for each country. I am struggling to find any such study that has been carried out as yet. Maybe a suitably qualified clinician may be able to enlighten us all please? Thank you
Reply Danielle Wright
3:47 PM on October 5, 2011 
I would like to help put together a similar video/film to talk about Adenomyosis as an educational tool. This is a recent one which has been developed for endometreosis. If any clinician has information/film/photograpy that they would like to see included in something such as this, please let me know. Thank you.

Danielle Wright,
Founder of Adenomyosis Advice Association

Enc: Endometreosis Video: http://vimeo.com/20910143
Reply parimala
5:25 AM on February 3, 2012 
is there any connection between adenomyosis and body pain. i also have malabsorption of vitamin b12. i want to know is there any connection between the three.
Reply Danielle Wright
10:36 AM on February 3, 2012 
parimala says...
is there any connection between adenomyosis and body pain. i also have malabsorption of vitamin b12. i want to know is there any connection between the three.

Hi Parimala, welcome to the Adenomyosis Advice Association's On-Line Support page. Adenomyosis causes a variety of symptoms and pain is one which is detailed on our symptoms page. Vitamin B12 plays a very important role in the body and lack of this important vitamin does not help when the adenomyosis 'tumours' are constantly bleeding internally since the body's iron reserves are already being stressed by the extra blood loss. Ultimately the constant blood loss can cause anaemia, which in itself has its own set of symptoms. All these symptoms are connected since the body has to be balanced in order to work effectively. In my experience, it is worth ensuring the diet is boosted by the relevant foods which will deliver the essential vitamins and minerals, and it is definitely advisable to go for relevant testing for absorbtion, vitamin/iron levels and deficiencies. There is definitely a greater need for more research in this area. DW
Reply Danielle
4:24 PM on February 8, 2012 
Please feel free to blog about the Adenomyosis Advice Association. We are aiming for global adenomyosis awareness to help as many women as we can. Kind regards, Danielle
Reply Marlene
1:49 AM on March 1, 2012 
Hello, I was relieved to find your blog. I am recently diagnosed, 47 years young and terrified. So little real information, is a hysterectomy the best solution or not?? Should I continue to stick it out until menopause?
Reply GAYNOR NICHOLLS
11:42 AM on March 1, 2012 
I was diagnosed October 2010 with extensive Adenomyosis confirmed by an MRI Scan after months of suffering and being misdiagnosed lots. I had a total hysterectomy December 2010 at the age of 37. I had many miscarriages and stillborns that were full term but no-one ever investigated why. The symptoms were debilitating and after the opertion I felt fantastic no labour pains or back ache. I have now started the menopause and commenced on HRT however I have started getting similar pains to what I had before in my back and abdomen. The consultant did say that the Adenomyosis was close to my breast tissue and that the hysterectomy may help with the symptoms but he couldn't guarantee it. I have never had a follow up appointment as the consultant retired in January 2011. Is it possible that I could be experiencing this again? If so what will help with this? It's really getting me down and my heart goes out to anyone suffering this x
Reply Danielle Wright
2:14 PM on March 1, 2012 
Marlene says...
Hello, I was relieved to find your blog. I am recently diagnosed, 47 years young and terrified. So little real information, is a hysterectomy the best solution or not?? Should I continue to stick it out until menopause?

Hi Marlene, I am glad you found the website. Your question is a good one and will be one that I am sure many women do and will ask themselves. From personal experience it is a matter of how severe your symptoms are and how life threatening/altering the condition has become. Looking at the condition generally, consider whether you really have tried every method of pain relief there is to date. Does your life go on hold for three out of four weeks per month because you cannot do the basic things - taking care of yourself at your usual pace, is it stopping you from walking, working, and have you now got secondary conditions from the constant bleeding - like anemia? Does your womb/the consolodated blood saturated tissue now weigh down on your spine - causing back ache/odema etc, are you constantly having to go to toilet since your bladder is impacted? with the mass? If the answer to these questions is yes, then it is time to take action. I am NOT a clinician, however, I am still in touch with my surgeon who fully endorses this website, as do many clinical and official organisations globally, and I would advise you in the first instance to seek medical advice and clarification from a qualified gynae specialist who knows YOU - not only your family general practitioner. Your body is different to mine and everyone elses, and you may have other conditions which are impacted or may be affected because of the condition. As to the question in relating to waiting until the menopause, determining when this is likely to happen is completely unpredictable and occurs at different times for every woman. At the end of the day it is your quality of life you must consider. The GOOD news is, if it is the right thing to do for you, your life will improve beyond 100% and I can certainly confirm that it has completely changed my life for the better. It is wonderful to feel at peace and to have my life back again. Wishing YOU all the very best health x Danielle x
Reply Danielle Wright
2:27 PM on March 1, 2012 
GAYNOR NICHOLLS says...
I was diagnosed October 2010 with extensive Adenomyosis confirmed by an MRI Scan after months of suffering and being misdiagnosed lots. I had a total hysterectomy December 2010 at the age of 37. I had many miscarriages and stillborns that were full term but no-one ever investigated why. The symptoms were debilitating and after the opertion I felt fantastic no labour pains or back ache. I have now started the menopause and commenced on HRT however I have started getting similar pains to what I had before in my back and abdomen. The consultant did say that the Adenomyosis was close to my breast tissue and that the hysterectomy may help with the symptoms but he couldn't guarantee it. I have never had a follow up appointment as the consultant retired in January 2011. Is it possible that I could be experiencing this again? If so what will help with this? It's really getting me down and my heart goes out to anyone suffering this x

Hi Gaynor. Thank you for your email. I am aware that adenomyoma legions can occur anywhere in the body. Adenomyosis is the name of the condition given specifically relating to the womb and surrounding tissue. I would suggest that you urgently get a referral to have at the very least a scan in the region where the pain is to diagnose what is really going on. Separately, why not telephone your previous surgeon's secretary/office, explain what is happening and get a name of an alternative surgeon and then visit your GP and get a re-referral to carry out some basic tests to see whether there are any other issues which were not detected before and go from there. At least that way you will know who you are being referred to and will have a little more control in how quickly things are moving. I wish you all the best and keep in touch and let me know how you get on. x Danielle x
Reply Kate
9:26 PM on May 31, 2012 
Hi Danielle,
Thanks so much for starting this site, I was diagnosed with this a year and a half ago and it's really hard to get any information. I'm getting married in the fall and hoping to try for a family immediately after. I'm 33, never had kids, NEVER had any problems with my period, no pain and always very normal periods. Out of no where about 2 years ago I had very light spotting about a week before my period so I went to my GYNO to figure out the problem, after every test in the book and laproscopic surgery, it was finally diagnosed. I was on Lupron for 4 months and have been on the pill since which hasn't been agreeing with me but supposedly it helps. After my second MRI they said my adeno was still in a very small localized area and hadn't really spread. My symptoms are confusing because any spotting issues I have are now after my period and could be due to the pill (beyaz). I'm so scared I'm not going to be able to conceive though and I'm wondering if anyone has been diagnosed with this and went on to have children? I'm hoping since it's not too bad at the moment perhaps I can be blessed with one or two before it gets worse. Thanks for any advice you can give.
Reply Danielle Wright
7:22 PM on June 1, 2012 
Hi Kate, I am glad you have found the site useful. Yes, adenomyosis can be present prior to and in fact subsides somewhat during pregnancy. This is because there is a good supply of hormones to oppose the estrogen (which in effect cancels out it's effects and halts its progression somewhat. If the area is localised and since your consultant is aware of the condition, you are in safe hands. Post pregnancy you will be able to keep a check on your symptoms and compare before and after scans etc if or as the condition progresses. As far as the spotting goes, the pill frequently causes symptoms of that nature. Once you have stopped taking any form of hormone, you will find that your cycle will probably become more normal again after three to six months. Best of luck with everything ongoing. Keep in touch x Danielle x
Reply Kate
4:37 PM on June 2, 2012 
Danielle Wright says...
Hi Kate, I am glad you have found the site useful. Yes, adenomyosis can be present prior to and in fact subsides somewhat during pregnancy. This is because there is a good supply of hormones to oppose the estrogen (which in effect cancels out it's effects and halts its progression somewhat. If the area is localised and since your consultant is aware of the condition, you are in safe hands. Post pregnancy you will be able to keep a check on your symptoms and compare before and after scans etc if or as the condition progresses. As far as the spotting goes, the pill frequently causes symptoms of that nature. Once you have stopped taking any form of hormone, you will find that your cycle will probably become more normal again after three to six months. Best of luck with everything ongoing. Keep in touch x Danielle x

Thank you so much for your response Danielle, this site is so helpful, I'll keep in touch and I'm sure I'll have more questions down the road.
-Kate
Reply ingrid
10:21 PM on June 12, 2012 
hi have done the Edenomyosis surgye and from that day am still in alot of pain please can u tell me why
Reply Danielle Wright
9:11 AM on June 13, 2012 
ingrid says...
hi have done the Edenomyosis surgye and from that day am still in alot of pain please can u tell me why

Hello Ingrid. With any kind of surgery there will be some pain for the following few days and weeks depending on where and what was operated on. I think your spelling was of adenomyosis but if you have had surgery for Endometriosis (the relative of adenomyosis in that the tissue shares some characteristics and operates with the monthly cycle and can spread anywhere in the body with the help of estrogen!) my advice would be: if you are in pain over and above what you were told to expect following surgery, you must seek medical attention either from your local general practitioner, your local hospital emergency department if necessary. With Adenomyosis surgery, the wound or areas that you have had surgery on will be very uncomfortable. You will have disruption with bowel and bladder movements for anything up to three months - and this is why it is VERY important to rest well but gently move about to regain your stamina. Your stitches/staples will/have be/en removed from 3-7 days post surgery. If you notice any swelling, pain, heat, temperature on your scar, or in your legs(anything that would indicate an infection or thrombosis) you MUST contact your doctor immediately. The pain relief you have been given may need reviewing and again this is a matter for your doctor. Finally, you may find it useful contacting the secretary to the surgeon that performed the surgery and ask them to pass a message to your surgeon for their advice. Please take care and keep in touch x Danielle x
Reply andrea
11:13 AM on June 15, 2012 
Hello - It's great to find an informative website. I was told by my ob/gyn just over a year ago that I have adno (following extended periods/some pain and ultrasound investigation. I am 48 now and had 2 c/sections in the past. My symptoms are more irritating than anything else. I get pain the first couple of days of my period and then my period just drags on for the next 7 days with spotting only. I know that menopause can put an end to this but I can't work out if I need to keep an eye on it with yearly exams or just check it when the symptoms are getting worse? Doctors appointments only last about 10 minutes and it's so hard to get enough information.
Reply Pen
4:57 PM on June 15, 2012 
Danielle Wright says...
I would like to help put together a similar video/film to talk about Adenomyosis as an educational tool. This is a recent one which has been developed for endometreosis. If any clinician has information/film/photograpy that they would like to see included in something such as this, please let me know. Thank you.

Danielle Wright,
Founder of Adenomyosis Advice Association

Enc: Endometreosis Video: http://vimeo.com/20910143

Hello Danielle. Thank you for putting this site together, it's been very helpful and reassuring for me. I have been diagnosed with adenomyosis and I'm struggling with it at the moment but about to start a course of tablets so we'll see what happens. It's hard to stay positive sometimes. I just wondered how you were getting on with the video? The one you have posted about Endometriosis was very informative. Thanks once again for your time putting this all together, it's really been a lifeline. Best wishes, Pen
Reply Danielle Wright
7:41 PM on June 16, 2012 
andrea says...
Hello - It's great to find an informative website. I was told by my ob/gyn just over a year ago that I have adno (following extended periods/some pain and ultrasound investigation. I am 48 now and had 2 c/sections in the past. My symptoms are more irritating than anything else. I get pain the first couple of days of my period and then my period just drags on for the next 7 days with spotting only. I know that menopause can put an end to this but I can't work out if I need to keep an eye on it with yearly exams or just check it when the symptoms are getting worse? Doctors appointments only last about 10 minutes and it's so hard to get enough information.

Hi Andrea,thank you for your question - which is a good one. It would benefit you to contact your gynaecologist via your doctor to arrange six or twelve monthly check ups just to see how and if things are progressing, since predicting when the menopause is likely to occur is not an exact science. Also with anemia, estrogen production and imbalances that adenomyosis creates - these can obviously lead to other serious issues, so it is best to ensure that you are in the best of health and have regular checks as a matter of course. Danielle x
Reply lesley percy
11:57 AM on June 27, 2012 
I had a hyst for adeno last March and wish I had found this site before then. There is very little information/support for this condition, I also have endo and there is much more info availabel on this.
Reply Vicky
1:50 PM on June 27, 2012 
Hello, I am super excited to find this web site. I am 26 years old and have had fairly substantial gynecological symptoms since age 19. I have previous history of left a fallopian tube mass. Resulting in a salpingectomy and diagnosis of Endosalpingiosis at 21. My pain, heavy bleeding and aneamia have been increasing since. My second laparoscopy/ hystersocopy was performed a year ago. Which is when I received the diagnosis of Adenomyosis. I have recently married and am currently trying to conceive. Having stopped the pill I am struggling to cope with the pain of this condition. I also experience extremely painful ovulation. I am very interested to find out if there are any pain management avenues I am unaware of. Which are safe to use whilst trying to conceive. Also I would be interested to know if there are many other young women with this condition. Any light you can shed on either of these questions would be a massive help. Thank you in advance.
Vicky
Reply Danielle
4:47 PM on June 27, 2012 
Vicky says...
Hello, I am super excited to find this web site. I am 26 years old and have had fairly substantial gynecological symptoms since age 19. I have previous history of left a fallopian tube mass. Resulting in a salpingectomy and diagnosis of Endosalpingiosis at 21. My pain, heavy bleeding and aneamia have been increasing since. My second laparoscopy/ hystersocopy was performed a year ago. Which is when I received the diagnosis of Adenomyosis. I have recently married and am currently trying to conceive. Having stopped the pill I am struggling to cope with the pain of this condition. I also experience extremely painful ovulation. I am very interested to find out if there are any pain management avenues I am unaware of. Which are safe to use whilst trying to conceive. Also I would be interested to know if there are many other young women with this condition. Any light you can shed on either of these questions would be a massive help. Thank you in advance.
Vicky

Hi Vicky, and thank you for your questions x To address the first issue of pain relief whilst trying to conceive, I would always err on the side of caution and stay away from any pain killers. A relaxing warm bath may help from time to time, as may gentle exercise, such as walking or swimming. Investing in a TENS machine might be a good idea, since this can also be used during labour. I always used to curl up on the sofa with a book and a hot water bottle in the early stages of the adeno as this did help somewhat. Reflexology is AMAZING and acupuncture is also very good. Finally, if you have a willing helper nearby, ask someone to give your lower back a gentle rub or if you are really lucky an all over massage. Regarding finding other young women with adenomyosis, there are sadly many members of the AAA who are very young. On our Facebook page I will post a message to say that we have a member who wishes to chat to other young women with the condition. You could hook up with someone there and chat in private x I am very glad you have found the AAA, and hope that we can all support you in some small way x Take care, Danielle x
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