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Adenomyosis Advice On-line Support Page

Blog

One Year On

Posted on August 15, 2012 at 3:27 PM
One Year On
 
 
So much can happen in the space of a year that often one easily forgets what has gone before. I for one never realised how much the surgery would alter the way I viewed life. It is one thing to get over the effects of the operation, but another to actually regain stamina and get the cardio-vascular system working well again and get back to your happy self!
 
For many women, any gynaecological surgery is painful and uncomfortable, but I think the thing that I found hardest to do was to rest and recover. Of course there are many things that go through your mind whilst having to rest.  Yes there were tears and frustration, and it was challenging to say the least on so many fronts.  I found it an ideal time to look back and consider how much life had changed before surgery and most importantly I had time to plan, think ahead and consider a new way forward. 
 
I have discovered over the year that some people prefer not to know about health issues and many people think adenomyosis particularly will happen to someone else and not them. I have spoken to and emailed hundreds of women who, like me, have had to face up to the reality that when your body is hurting, something IS actually wrong.
 
I have been approached by hundreds of organisations all over the world who are actively supporting the association's work. There have been over 100,000 visitors to the website who are searching for adenomyosis via search engines looking for 'adenomyosis', 'pain relief for adenomyosis' and struggling with'adenomyosis and miscarriage'. Whilst the feedback about the website has been positive, I have also had one or two emails that have clearly indicated that some government bodies and organisations simply do not seem to care about women's health generally and do not feel the need to improve the standards of diagnosis in the detection of the condition. I expected this, so it came as no shock to me. In fact it made me even more determined to try and influence others to take the matter more seriously.
 
I felt that to get noticed, the organisation needed to gather more data, so in response to this I decided to go one step further and asked women suffering from the condition and those who were now treated to participate in a global study to see if there was a link between everyone, some common cause (nature or nurture) and whether anything else had had an impact on their condition. So many women came forward and many responded selflessly. The results are of course yet to be published in 2013 and will no doubt interest many who work in the field of gynaecology and beyond. The support from the association members has restored my faith in humankind again, that there are others out there who understand and like me want answers for themselves, their families and future generations.
 
Of course the survey was only one way of reaching out to others. I have over the last year received some fantastic feedback from women from all corners of the globe, some of whom cannot openly talk about women'sissues health and other problems as society still does not afford that freedom where they are located in their part of the world. This in itself is a hurdle that it has been great to (in a small way) overcome a barrier which had not previously occured to me.  I have heard from young girls battling with this condition whose lives have been turned completely upside down, women of all ages who want to go on and have a family despite their pain and distress and from their partners and other family members who have been searching for more information about adenomyosis.
 
I can only say that without the skills of my surgeon MrPakarian, goodness knows where I would be now.  I owe my health to him and his colleagues who took very good care of me at the point I needed their help most. It is down to clinicians with skills and teams like Mr Pakarian all over the world to diagnose and treat this cruel and debilitating condition. With the advance in treatments such as OSADA by Dr Osada and Dr Silber in the USA, women can look forward to a more healthy,  controlled and comfortable life, and it is for the medical profession all over the world to look to these leading clinicians to get the training that they need to detect, treat and help more women overcome adenomyosis.
 
Moving forward, here's to another year of supporting others and spreading the awareness yet further.
 
Wishing you all very good health and happiness.
 
Danielle x
 

Categories: One Year On

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56 Comments

Reply rachel
7:38 AM on September 30, 2012 
Thank you for such a great site. I am 29 and have been diagnosed with endometriosis since 24. I have had two laparoscopy ops. The first found endo and was treated, the last op found nothing. The pain hasn’t ever really gone away. Painful intercourse for years and it has got worse in the last two years. I have been on the pill without breaks for over a year and nothing has changed. Looking at your symptoms page I have 90% of the symptoms of adenomyosis. I am going to have a second opinion on Monday from a different hospital as the last one discharged me with IBS. In your opinion do you think that it is likely that I have it and how do I make my consultant investigate it? Thanks x
Reply Melanie
9:30 PM on October 2, 2012 
rachel says...
Thank you for such a great site. I am 29 and have been diagnosed with endometriosis since 24. I have had two laparoscopy ops. The first found endo and was treated, the last op found nothing. The pain hasn’t ever really gone away. Painful intercourse for years and it has got worse in the last two years. I have been on the pill without breaks for over a year and nothing has changed. Looking at your symptoms page I have 90% of the symptoms of adenomyosis. I am going to have a second opinion on Monday from a different hospital as the last one discharged me with IBS. In your opinion do you think that it is likely that I have it and how do I make my consultant investigate it? Thanks x

I almost felt like I was reading my own comment when I read yours! I am 35 pain started 7 years ago and have had 2 laprascopic surgeries for Endo and no relief.. Excruciating pain, esp. when sitting. I was finally diagnosed with Adeno in June 2012 and going in for consult on Oct 18th to plan for hysterectomy (just uterus). My Obgyn finally saw that I had Adeno on my last ultrasound. You should tell you Dr. what you have read and ask for an ultrasound... unfortunately, it is not always clear. I have been on continuous BC for years and was doing ok for short periods of time, but had to leave my job due to the constant pain. I am soo done...I wish you luck, keep on your Dr. and educate her/him...
Reply angie
9:52 AM on October 18, 2012 
So sorry to butt into your post but hoping you have any advice for me please...I'm so desperate. I was bleeding heavily for years and tried everything from coil, implant, the pill and it all made the bleeding worse plus my pain was awful. With all this I was exhausted all the time and my iron low. Then 3 years ago I had an endometrial ablation. This helped with the pain and eased it plus I didn't bleed anymore except for some spotting. But then a year ago the pain started again and has gotten worse. I have kept a diary and I have some pain through the month but worse times are when I'm ovulating and ment to be menstruating. I mostly always have lower back pain just worse at some points, I have awful bloating and windy, bad spots, really tired all the time (even though 3 times a week I run or brisk walk and this totals 10 miles) but this tires me out so much I have to have a sleep, I don't sleep for longer than 3 hours at a time at night, the pain is usually in one ovary or both but also pains in my thighs, also get bad period pains lower abdomen. I have an appointment to see the gynaecologist in 3 weeks. What do you suggest I ask him to check for and what do you think it might be? I am so desperate to be pain free and live a normal life I would have it all ripped out if I had the option.
Reply Danielle Wright
8:30 PM on October 18, 2012 
angie says...
So sorry to butt into your post but hoping you have any advice for me please...I'm so desperate. I was bleeding heavily for years and tried everything from coil, implant, the pill and it all made the bleeding worse plus my pain was awful. With all this I was exhausted all the time and my iron low. Then 3 years ago I had an endometrial ablation. This helped with the pain and eased it plus I didn't bleed anymore except for some spotting. But then a year ago the pain started again and has gotten worse. I have kept a diary and I have some pain through the month but worse times are when I'm ovulating and ment to be menstruating. I mostly always have lower back pain just worse at some points, I have awful bloating and windy, bad spots, really tired all the time (even though 3 times a week I run or brisk walk and this totals 10 miles) but this tires me out so much I have to have a sleep, I don't sleep for longer than 3 hours at a time at night, the pain is usually in one ovary or both but also pains in my thighs, also get bad period pains lower abdomen. I have an appointment to see the gynaecologist in 3 weeks. What do you suggest I ask him to check for and what do you think it might be? I am so desperate to be pain free and live a normal life I would have it all ripped out if I had the option.

Hi Angie, yes - go ahead and ask him to do an MRI scan to look for adenomyosis. All your symptoms sound very similar to those that I had. It may also be worth being checked for low iron stores - which is a different test and WILL indicate if your body is under the sort of pressure that you describe in terms of weakness - not anemia per se however that you are losing blood and the nutrients that you need faster than you should be. Just a final thought, also ask him to check your ovaries for cysts - as the hormonal imbalance may be something to do with either or both if no adenomyosis is spotted straight away. I wish you the very best of luck, keep in touch and let me know how you get on x Danielle x
Reply angie
8:29 PM on October 19, 2012 
angie says...
So sorry to butt into your post but hoping you have any advice for me please...I'm so desperate. I was bleeding heavily for years and tried everything from coil, implant, the pill and it all made the bleeding worse plus my pain was awful. With all this I was exhausted all the time and my iron low. Then 3 years ago I had an endometrial ablation. This helped with the pain and eased it plus I didn't bleed anymore except for some spotting. But then a year ago the pain started again and has gotten worse. I have kept a diary and I have some pain through the month but worse times are when I'm ovulating and ment to be menstruating. I mostly always have lower back pain just worse at some points, I have awful bloating and windy, bad spots, really tired all the time (even though 3 times a week I run or brisk walk and this totals 10 miles) but this tires me out so much I have to have a sleep, I don't sleep for longer than 3 hours at a time at night, the pain is usually in one ovary or both but also pains in my thighs, also get bad period pains lower abdomen. I have an appointment to see the gynaecologist in 3 weeks. What do you suggest I ask him to check for and what do you think it might be? I am so desperate to be pain free and live a normal life I would have it all ripped out if I had the option.

Hiya Danielle. Thank you so much for your reply. I will certainly do what you suggested. This year so far I haven't had my iron checked but end of last year it was low as per usual. These kind of hassles seem to be in the family. As my mum had to have a full hysterectomy when she was 32. Now that was a long time ago and those days they didn't know as much as they do now. I've been told I have IBS and then that I'm gluten intolerant. I also have had cysts on the ovaries which have gone with medication. I sometimes think and feel as though I'm losing my mind and I'm making this stuff up. I do as much excercise as I can which is a brisk walk 3 times a week that totals 15 miles. But I do have to sleep during the day as I could never make it through till about 7pm at night if I didn't. I get so tired it frustrates me awfully. But fortunately I have a very understanding husband and together we get things done. It's not an easy way of living but what else am I ment to do???? x
Reply Lori
11:35 AM on November 4, 2012 
I found out I have Adenomyosis finally after a year of suffering. Now I go back to the doctors on Tuesday. Now anyone tell me should I go for a full hystercomy to stop this all together or can I keep my ovary. Yes I only have one ovary lost the other one yrs ago due to a cyst. I mean I'm 45. I just need this pain to be over with, I'm so miserable, tired and constant pain. Only time Im not in pain is one week out of the month right after my period and it starts right back up again. Please HELP
Reply angie
7:01 PM on November 4, 2012 
Lori says...
I found out I have Adenomyosis finally after a year of suffering. Now I go back to the doctors on Tuesday. Now anyone tell me should I go for a full hystercomy to stop this all together or can I keep my ovary. Yes I only have one ovary lost the other one yrs ago due to a cyst. I mean I'm 45. I just need this pain to be over with, I'm so miserable, tired and constant pain. Only time Im not in pain is one week out of the month right after my period and it starts right back up again. Please HELP

Hiya Lori. Sorry I don't have the answer for you as I feel the same as you...I'm soooo tired of being tired, all the pain most of the month etc. So sorry you having a rough time. Hope you don't mind me asking please, how did they find out you had adenomyosis?
Reply Nicky
2:21 PM on November 25, 2012 
Just been forwarded over to this website from a link on endo uk, which is great thank you.
Im really interested to know your thoughts on conceiving (unfortunately due to everything i need ivf) after having adenomyosis removed... and obviously if my chances of ivf working are reduced ??
any advise would be great, thankx
Reply Danielle Wright
8:44 PM on November 28, 2012 
Nicky says...
Just been forwarded over to this website from a link on endo uk, which is great thank you.
Im really interested to know your thoughts on conceiving (unfortunately due to everything i need ivf) after having adenomyosis removed... and obviously if my chances of ivf working are reduced ??
any advise would be great, thankx

Hi Nicky, thank you for your enquiry. You may like to visit the LIVESTRONG website that has excellent advice about fertility and also removing excess estrogen from your diet etc. Managing the effects of adeno to ensure pregnancy is not easy, but it is possible and a healthy pregnancy can be achieved x
Reply Heather
6:06 AM on December 10, 2012 
Hi Danielle, I have just passed the 3rd anniversary of my partial hysterectomy due to adenomyosis. I was diagnosed right before my 36th birthday in 2010. I wanted to thank you for such a truly warm and informative site you have created. When I was diagnosed I honestly didn't realize how sick I actually was and how many symptoms I had. I just thought I was an over-worked, exhausted, irritable wife and mother of two. It wasn't until I finally recovered from the hysterectomy that I could reflect on just how sick I was. I remember my husband (who is originally from Lincolnshire btw) and I, from the US, trying to do research so that we could be more informed with the disease, but there really wasn't much out there, even in 2010. Now, it seems to be greater thanks to people like yourself. I can say I thought for the longest time...oh great, of course I would be the one to get something not very well known. Now I don't feel so "abnormal"! Should you need any more info for your survey or future research, I would gladly make myself available. THANKYOU! Heather
Reply Danielle Wright
6:55 PM on December 10, 2012 
Heather says...
Hi Danielle, I have just passed the 3rd anniversary of my partial hysterectomy due to adenomyosis. I was diagnosed right before my 36th birthday in 2010. I wanted to thank you for such a truly warm and informative site you have created. When I was diagnosed I honestly didn't realize how sick I actually was and how many symptoms I had. I just thought I was an over-worked, exhausted, irritable wife and mother of two. It wasn't until I finally recovered from the hysterectomy that I could reflect on just how sick I was. I remember my husband (who is originally from Lincolnshire btw) and I, from the US, trying to do research so that we could be more informed with the disease, but there really wasn't much out there, even in 2010. Now, it seems to be greater thanks to people like yourself. I can say I thought for the longest time...oh great, of course I would be the one to get something not very well known. Now I don't feel so "abnormal"! Should you need any more info for your survey or future research, I would gladly make myself available. THANKYOU! Heather

Dear Heather, thank you for your lovely message. I am very pleased that you have found the website some support even post surgery. It is very important to me that the research that we do within the association is ongoing and monitors how women do after surgery to ensure that other women understand what adenomyosis is about and how to recognise the symptoms no matter what their age and MOST importantly that there is life AFTER adenomyosis! I will be publishing the results of the 2012 survey in January and thereafter there will be another survey for 2013. Please feel free to contact me in the new year to take part! x Thank you for your support x Danielle x
Reply karen
12:46 AM on December 25, 2012 
This is the best site I have found and it is such an excellent and informative site, so thank you for that.
What I wanted to ask is why does adenomyosis cause lower back pain, and / or constipation and what you can do about it? Thanks
Reply Danielle Wright
4:06 PM on December 25, 2012 
karen says...
This is the best site I have found and it is such an excellent and informative site, so thank you for that.
What I wanted to ask is why does adenomyosis cause lower back pain, and / or constipation and what you can do about it? Thanks

Hi Karen, and thanks for your feedback. It is reassuring to know that you are finding the information that you are looking for on the website x Adenomyosis in its worst form not only affects the density and weight of the womb, but it also presses on the nerves and muscles within the pelvic cavity, on the spine and consequently the nerve pain that is felt can occur in the lower back, thigh, groin, even as far down the leg as the knee. As you may well be aware, the lower spine (lumbar region) particularly L1, L2 and L3 areas (please look at this link)

http://www.google.co.uk/imgres?q=nerve+areas+supplied+by+the+spin
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actic.net/information/vertebral_diagram&docid=MfR8AlKgNhwoSM&
amp;imgurl=http://www.amcchiropractic.net/cms/files/VertebralSubl
uxationandNerveChart_0.jpg&w=1000&h=954&ei=cM3ZUPOgLq
We0QXkKQ&zoom=1&iact=hc&vpx=514&vpy=111&dur=1
392&hovh=219&hovw=230&tx=139&ty=138&sig=10356
0011427104392008&page=1&tbnh=137&tbnw=144&start=0
&ndsp=37&ved=1t:429,r:4,s:0,i:100

are also in direct contact with the swollen uterus and this in turn affects the bowel. All this pressure going on makes for impacted bowel movements, constipation and even the opposite as the nerves receive partial messages from the spine. It is worth going to your GP and asking for a stool softening medication like Movicol or something similar (generically) that suits your body and can assist to make you more comfortable mid-cycle. Different people react to different food stuffs and when people talk about fibre, what really helps one person can do the opposite with another. Best rule is drink plenty of water, stay clear of alcohol as best as you can and even caffeine as this dehydrates the body somewhat x Livestrong.com is a very useful website that helps advise on good diet etc x Keep in touch x Danielle x
Reply Dannygurl
5:15 AM on January 1, 2013 
I am at this moment recovering from my hysterectomy to "cure" my adenomyosis. I didn't have severe symptoms until following a UFE (uterine fibroid embolization). I knew in my heart that there was a correlation to the procedure and my pain and suffering with severe cramps, however, the doctors dismissed my complaints saying "no other patients have ever had these problems."

I suffered for four years until I could take it no longer and my GYN sent me to a specialist who examined me, told me my uterus had doubled in size, and he immediately diagnosed adenomyosis. It may have been his German accent when he was explaining the condition to me, but I really didn't understand the condition until I did my own research.

I must say, your site is the only which truly covered the entire scope of my symptoms: severe cramps, pain radiating down my leg, back pain, bloating, bowel issues, etc. I was so excited about my hysterectomy, am recovering well so far, and have absolutely no regrets about this surgery. I am looking forward to my first month with NO PAIN NOR SUFFERING!

God bless all of you women out there who are going through this. Hysterectomy is life-changing to many women in negative ways, but for me it equals sweet relief.
Reply Francine Kozlowski
4:29 AM on January 4, 2013 
I just recently have been dx with adenomyosis. I am so glad I found your site!!! I suffer from PCOS as well and am wondering if these have been found to be related. I undergo a partial hysterectomy this February but despite the PCOS the surgeon wants me to keep my ovaries. Just wondering if anyone else has had this experience and how successful was the symptom relieve with keeping the ovaries?? Thanks for all the info o far!!!
Reply danielle wright
10:20 PM on January 17, 2013 
Francine Kozlowski says...
I just recently have been dx with adenomyosis. I am so glad I found your site!!! I suffer from PCOS as well and am wondering if these have been found to be related. I undergo a partial hysterectomy this February but despite the PCOS the surgeon wants me to keep my ovaries. Just wondering if anyone else has had this experience and how successful was the symptom relieve with keeping the ovaries?? Thanks for all the info o far!!!

Hi Francine, my guess is that because of your age, your surgeon feels that leaving your ovaries is the best thing for you. I would refer you to the main Facebook page where many women have indicated that they have had their uterus removed because of the adenomyosis and have kept their ovaries and that this has helped them very much. This ensures that there are sufficient levels of hormone and even if one ovary is left, this can give sufficient levels of hormone to keep the symptoms of menopause away. One thing to be aware of is that after surgery, the body is aware of the fact that the uterus has been removed, so your body may go through a 'shock' where the blood supply to the ovary/s is disrupted x All in all with PCOS, the cysts often come and go as they please, and as you have been diagnosed with this condition, your surgeon will be sure to keep an eye on this condition - you are in very safe hands xx
Reply Danielle Wright
2:53 PM on January 20, 2013 
Dannygurl says...
I am at this moment recovering from my hysterectomy to "cure" my adenomyosis. I didn't have severe symptoms until following a UFE (uterine fibroid embolization). I knew in my heart that there was a correlation to the procedure and my pain and suffering with severe cramps, however, the doctors dismissed my complaints saying "no other patients have ever had these problems."

I suffered for four years until I could take it no longer and my GYN sent me to a specialist who examined me, told me my uterus had doubled in size, and he immediately diagnosed adenomyosis. It may have been his German accent when he was explaining the condition to me, but I really didn't understand the condition until I did my own research.

I must say, your site is the only which truly covered the entire scope of my symptoms: severe cramps, pain radiating down my leg, back pain, bloating, bowel issues, etc. I was so excited about my hysterectomy, am recovering well so far, and have absolutely no regrets about this surgery. I am looking forward to my first month with NO PAIN NOR SUFFERING!

God bless all of you women out there who are going through this. Hysterectomy is life-changing to many women in negative ways, but for me it equals sweet relief.

Hi and thank you for your comment x I am very glad to hear that you have now had the treatment that you needed and wish you the very best in your recovery x Keep in touch x Danielle x
Reply Natalie Davey
11:45 AM on January 21, 2013 
I started suffering suddenly from this 2 and a half years ago, having previously been diagnosed with PCOS. My adenomyosis wasn't diagnosed until April last year and I really have not had any support. It has turned my life upside down and is frustrating because people aren't aware of it and therefore seem to brush it off as painful periods. It is more than that and has had a massive impact on me, my life and my family. I have been urgently admitted to hospital twice with it and actually collapsed and passed out with it the last time which was very frightening. I also like many others have been receiving treatment for IBS which after reading posts on this site I am now wondering if that has been misdiagnosed. It has been a relief to come across this website and realise that I'm not as alone as I have felt and that what I suffer is because of this dreadful condition. I also find it so frustrating that whenever I tell people what I've got they instantly say "oh yes endometriosis" because nobody knows about adenomyosis. Greater awareness, help, support and advice are definitely needed for this condition. Thank you for your website x
Reply Danielle Wright
12:49 PM on January 21, 2013 
Natalie Davey says...
I started suffering suddenly from this 2 and a half years ago, having previously been diagnosed with PCOS. My adenomyosis wasn't diagnosed until April last year and I really have not had any support. It has turned my life upside down and is frustrating because people aren't aware of it and therefore seem to brush it off as painful periods. It is more than that and has had a massive impact on me, my life and my family. I have been urgently admitted to hospital twice with it and actually collapsed and passed out with it the last time which was very frightening. I also like many others have been receiving treatment for IBS which after reading posts on this site I am now wondering if that has been misdiagnosed. It has been a relief to come across this website and realise that I'm not as alone as I have felt and that what I suffer is because of this dreadful condition. I also find it so frustrating that whenever I tell people what I've got they instantly say "oh yes endometriosis" because nobody knows about adenomyosis. Greater awareness, help, support and advice are definitely needed for this condition. Thank you for your website x

Dear Natalie, I am very glad you have found the website, and rest assured you are NOT on your own. When mentioning your condition please do mention the association and the website so that your colleagues, friends, family and anyone who comes into contact with you that notices you are unwell - can have an awareness of adenomyosis and can understant the condition more. In the meantime, make sure that you keep as well as you can, and ensure that you update your doctor/gyane specialist regularly if and as your symptoms change x Together we will make others aware, and you are always welcome to email whenever you need x Danielle x
Reply Hazel Patterson
11:05 PM on January 24, 2013 
Hi and thank you for such a great website. I am recovering from a total hysterectomy with removal of ovaries which I had on the 12th December. I was only diagnosed with Adenomyosis after the surgeon found a mass behind my womb and sent it off to pathology. I just got the letter in a couple of days ago confirming the diagnosis. I had thought all along I had endometriosis. I had never heard of Adenomyosis and none of the gynaecologists had mentioned it to me before. I have been suffering daily pain for three years following a flexible sigmoidoscopy to investigate rectal bleeding. During the procedure the nurse touched an area and I hit the roof. I'm sure that this procedure cause my problem or maybe it just highlighted something that was already there. Either way, that was the start of my problems but everyone just shrugged me off. I was also diagnosed with an underactive thyroid and fibromyalgia at the same time so any problems with heavy bleeding and clots were shrugged off and put down to my other problems. It's easy for me to still get really angry when I think about the pain I put up with for three years. I work within the NHS and I still didnt get anywhere with a diagnosis. It took for me to push for a hysterectomy to try and get well again. I know its not a magic cure for endometriosis but I was willing to try anything to start living my life again. Fortunately I had my son when I was 23 and am now 41. A lot of women aren't as fortunate. I havent been able to tolerate HRT either. Have tried 4 different ones and they just bring my symptoms back and sore breasts too. My gp has given me calcium tablets and I'm going to just try and get fit this year and take up jogging. I'm already taking Fluoxetine which help with flushes and had been having GnRH injections for 9 months so the menopause wasn't as much as a shock to my body I dont think. I was really weepy after the anaesthetic though and a bit down once I got home. I went to my gp to get another sick line for work the other day and showed her my letter with my diagnosis, She just said "oh well you'll be glad you just had a muscular condition then and it was nothing to worry about". Just makes my blood boil that I had to go through so much pain and a hysterectomy to get a diagnosis. And the end of a four year relationship !! I asked for an MRI and was told it wouldnt show anything up. Even asked to go privately and got no where. I've learned through all of this to trust my instincts. You know your own body better than anyone and know when something isnt right. Sorry for the rant.

Hazel x
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