Adenomyosis

[mummy_2_4]

Oh thank goodness for you guys!!!

I have just been diagnosed with adenomyosis, I had been refered to the Recurrent Miscarriage Clinic at the Women's as we have had 6 miscarriages in the space of 18 months, i have PCOS and my mum has Lupus, i thought it would have something to do with me having Lupus also (which i dont) however through an ultrasound they diagnosed Adenomyosis and the doctor there said it will NOT effect fertility and is NOT the cause of the losses, well i am no expert but i have been blessed with 4 children, all c-sections and had no problems in conceiving, my youngest is nearly 3 and to have all these losses since him, i would say that it has lots and lots to do with fertility and the ability to keep a pregnancy, i spoke to my f/s about it and he confirmed that it is nearly impossible to get pregnant naturally when you have adenomyosis as it is much harder to get rid of, due to where it is, and the only way to relieve pain is with a hysterectomy which is not an option at the moment. I am currently doing my 2nd round of IVF, and he has put me on cortisone, antiboitics and asprin to help me get pregnant and keep a pregnancy, so fingers crossed this time round we will be blessed i think that not enough is known about this condition, it is a very horrible thing to have, i am in constant pain which i thought was the PCOS, but i think personally that the Adenomyosis is much worse to handle rather than the PCOS, and that is bad enough to bare! If i am not on the pill i will bleed for over 120 days on end, become anemic and the pain is just really really too hard to handle, when i am on the pill, even when i reach the sugar tablets i will not bleed at all, and this could go on for another 120 or so days until i take something to bring on the bleeding, its just a rollercoaster ride, emotionally and physically and like others IRL no one seems to understand it, which sometimes does my head in cause i start to think that maybe its just me, maybe i dont really feel this way - but i can assure you the pain is all very real!

[Jensa]

Hi all,

I was recently (4 months ago) diagnosed with adenomyosis and my gynaecologist prescribed the contraceptive pill (brand called yasmin) and the IUD called merina. I am now into my third cycle of taking the pill but it hasn't stopped the pain or heavy bleeding, in fact I feel slightly worse off as I now have a more regular cycle (28 days) as opposed to pre pill of a six week cycle. Reading your stories was so comforting to know I'm not alone. I realise a number of you are trying to fall pregnant so the pill is obviously not your solution. I have had fertility problems for the last fifteen years (am now 40) experiencing 3 miscarriages on the way. I have been diagnosed with a bicornuate uterus, broad uterus and PCOS (yes I won the lottery). Not being able to conceive my husband and I adopted our two beautiful children last April from Cambodia. For those of you not able to conceive do consider adoption, I feel blessed every day to have these two wonderful children living with us.....As for the adeno, my gynacaeologist believes the combination of the pill and IUD should help this condition. (Brownbug ask your physician about this before the hysterectomy). I was reluctant to have the IUD not feeling comfortable with something being inserted in my body, however the pill is not enough on its own. This condition is so debilitating that somedays during the worst of my pain I wish I could just rip out my uterus but deep down I'm not ready for the hysterectomy. I realise now I will have to have this IUD inserted and see how the combination of the two helps me.

Thinking of you all.

Jen

[desist]

Hi Jensa,

I too was diagnosed recently with adenomyosis, I'm 24yo but not planning for children just yet. I also have endo but most of this has been cut out.

I am on the pill (Brevinor) plus another contraceptive (Primolut N) daily and constantly, ie no sugar pills and no periods at all. There is daily pain which varies but it is usually only minor. I still get serious pain if i do bleed, which only happens if I miss a pill.

I will have a mirena inserted in november to try to control the adeno a bit better.

Maybe taking an active pill constantly may would help you too? I don't have PCOS so I'm not sure what affect this would have but maybe worth asking your gyno. It is nice to not have that horrible pain associated with bleeds.

I hope this helps, good luck

[Jensa]

Dear Desist,

Thanks for the reply and letting me know you still get a little pain and occasional bleed, I feel it is then normal for me to expect this too. I'm off to see my local GP next week and she may send me off to the gynae as well. Let me know how you go with the mirena?

All the best Jen

[julianaNZ]

As most of you girls, i am pleased to realise that I am not alone. Of course we know that there are other people out there with our condition, but it is wonderful to be able to share our experiences with them.

I am 27 years old now and discovered that there was something wrong 2 years ago. It all started when I noticed cramps that would happen a week before my actual period and even a couple of days after it was over. The pain is not intense, but it was enough for me to notice and think: what is going on? So I had an ultrasound and the findings were suggestive of Adenomyosis. I do not have an enlarged uterus or intense pain, but I do worry about fertility issues.

To cut the long story short, I still do not have a conclusive diagnosis, and was not offered any options for treatment, not even follow-ups by the gynae that I saw at the time. But I will see my previous gynae during my holidays (when I will go back to my home country) and see if she can offer some reassurence. And then I am planning to see another gynae here in NZ if necessary.

It really frustrates me that I had no certain answer. I am from the health area so I know that in some cases that is not possible, but I do struggle with the lack of guidance from the doctors that I have seen. Because I am not yet actively trying for a child, they usually dismiss the issue.

But I really really want to be able to get pregnant and I have plans of starting to try for one soon. Sometimes I wonder If I should just get on with it immediatily and see how it goes...

I am currently on Cerazette (mini pill) due to blood pressure problems and my periods stopped right after starting it. But I still feel the same weird cramps, as well as back and leg pain, although there is no period.

I would love to read your commnents in regards to this issue and hope everything goes well for all of us

[prlh2000]

Hello all!

I am a 35 year old mother of two beautiful girls - 8 & 5 - and feel very blessed to have them. Being a single parent for several years I thought for sure I was never going to have any other children (by choice). However, I met the most amazing man ever and we began dating in early February 2006 and quickly decided this was the man I want to be with for the rest of my life.

In April 2006 I was referred to a specialist and diagnosed with uterine polyps and possibly (90% sure at that time) adenomyosis. I was offered hysterectomy but declined because the man I love so much has no children of his own and had told me he wanted to get married and have at least one child of his own someday. Besides that, I reall wasn't sure I wanted to take such a drastic step and lose such a huge part of my womanhood. I had surgery to remove the polyps (three of them) and a few small spots of endometreosis. I felt great after the surgery!

Two years and four months after my surgery (December 2008) I feel like I am going to die. I hurt so bad so often - on a daily basis - that I just want to curl into a ball and stay in my bed all day. This makes it very difficult to do even every day activities. My house is a disaster along with every other aspect of my life (work, college, motherhood, girlfriend, family member, etc.).

I decided to visit my specialist again on December 12th. He flat out told me that we want a baby "we had better do it now". I didn't ask him to ellaborate as know what he means just by how I am feeling these days. We've decided to try for a baby, but honestly, getting a hysterectomy never sounded so good as it does right now

[mintymintymid]

I am 22 years old and have just been diagnosed with adenomyosis. My specialist is Dr Tsaltsas and I have found him to be a great guy who genuinely wants to help. I feel very lonely and don't know where to turn. My partner is 27 and says he isn't ready for children for at least another 5 years yet I've been told that I don't have many options and as time goes by, the pain will continue to get worse, although I can't imagine how it could get any worse than it already is. My periods come monthly for about a week and strangely that is the only week per month where the pain is actually bearable.
I guess I'm just on here to talk to others who are or have been in similar situations and see how different courses of action helped or didn't help before I start making life changing decisions.

Thanks!

Lisa

[prlh2000]

mintymintymid...you are so young and this diagnosis seems a bit much in my mind (not to say it is not so). My specialist says that adenomyosis is generally found in women who have already had children and usually they are older. Now I'm not saying he knows it all... I guess, if I were you, I would go get a second opinion from a 'specialist' in the field of reproduction.

I know that I was diagnosed (90% certainty) in August 2006. My fiance and I had practiced safe sex until December 2008, as we just weren't ready for another child (my girls' are not his). In the past I could just look at a penis and get pregnant! Now...here we are six months later and we are still unable to get pregnant

If you get a second opinion and the doctor tells you the same thing, I would have a sit down with your guy and tell him how it is...either get going on it or risk the chance of it never happening (unless you want to go the IVF route).

Hope this helps. Message me anytime if you have questions. Sometime information from people who are going through what you are is the best way to deal and heal! Take care.

[prlh2000]

So...for all you women who suffer from adenomyosis and are concerned whether you will ever be able to bare children or not... after six months of trying to get pregnant and thinking it will never happen, I am finally pregnant! A HUGE surprise!

I am so surprised it didn't happen sooner, as I have discovered that my ovulation dates ran two days before the actual calculated dates (14th day after first day of period) and we were using calculations as means of birth control for about a year.

I don't want to boast, but I want you all to know that it can happen. Maybe your body will pull a trick on you too!

Good luck!

[rainbow123]

Hello to you all... just been diagnosed with adenomyosis after my 4th lap surgery for endometriosis, have had blocked fall tube, my other tube removed, ovary stuck to my side wall... lots of other stuff stuck together due to endo. I have been on the induced menapause via implants into my belly (it was hell for 6 months) I also had to have Provera to offset the side effects hot flushes..After my 4th lap surgery my only remaining fall tube was unblocked... yay!! Had my first period after lap surgery and couldn't believe how heavy it was. Been told to start for family ASAP. Didn't even know adenomyosis existed until a week ago... ready to start trying to concieve naturally... after reading all the chat's here am not sure what to expect. I am 33 and really want to have my own family more than anything. My heart goes out to you all who are trying and those who are also in pain due to this terrible disease. I have been advised by my surgeon Prof Maher (Australia Melb) to try 2 days before ovulation date and also 2 days after... I now understand why he said that (clever man) after reading one girls story of trying to concieve for over a year to find out she was ovulating 2 days earlier than what she thought. I am in some form of pain each day, not just during my period. I have had so much time off work. I felt broken for some time and that no one understood.. friends etc.. kept saying get preggers it will cure it, little to they know. got no idea to expect when it comes to falling preg, and what my percentage of miscarriage is and how much pain to expect during pregnancy, and can i carry baby full term with adenomyosis.... will baby grow ok ? so many questions... Looking forward to hearing from you all about what you know about adenomyosis, pregnancy etc...

[rainbow123]

Hello all!

I am a 35 year old mother of two beautiful girls - 8 & 5 - and feel very blessed to have them. Being a single parent for several years I thought for sure I was never going to have any other children (by choice). However, I met the most amazing man ever and we began dating in early February 2006 and quickly decided this was the man I want to be with for the rest of my life.

In April 2006 I was referred to a specialist and diagnosed with uterine polyps and possibly (90% sure at that time) adenomyosis. I was offered hysterectomy but declined because the man I love so much has no children of his own and had told me he wanted to get married and have at least one child of his own someday. Besides that, I reall wasn't sure I wanted to take such a drastic step and lose such a huge part of my womanhood. I had surgery to remove the polyps (three of them) and a few small spots of endometreosis. I felt great after the surgery!

Two years and four months after my surgery (December 2008) I feel like I am going to die. I hurt so bad so often - on a daily basis - that I just want to curl into a ball and stay in my bed all day. This makes it very difficult to do even every day activities. My house is a disaster along with every other aspect of my life (work, college, motherhood, girlfriend, family member, etc.).

I decided to visit my specialist again on December 12th. He flat out told me that we want a baby "we had better do it now". I didn't ask him to ellaborate as know what he means just by how I am feeling these days. We've decided to try for a baby, but honestly, getting a hysterectomy never sounded so good as it does right now

Hi - just wondering how you are going with trying to concieve after you were told to start trying by your Dr?

[kylierenee]

Hi, my name is Kylie, I am 20 years old and have 3 kids (young mum, but please don't judge me),
I had my youngest daughter, Emily, in November last year, after the birth the placenta would not come out, I ended up going into surgery 3 times before they finally removed it and found out that I had placenta accreta (my placenta had grown into the muscle of my uterus. Which caused alot of damage to my uterus, so I was informed by numerous doctors that it would not be a good idea to have another baby because it will happen again.
So in March this year I had a tubal ligation.
Since birth I have had very painful, heavy and completely irregular periods, I have had 2 ultrasounds to try and find the cause of it and both showed possibilities of Adenomyosis, I have seen 2 different GPs and both have just pretty much shrugged it off.
I am wondering what I should do, I hate being in constant pain, and my iron levels are still extremely low from the placenta accreta, surely losing all this blood isn't going to help? I have my period at the moment and it has been going for the past 3 weeks and has no signs of stopping!
Thanks,
Kylie xxx

[strawberrykiss]

Hi mintymintymid,

I to see Jim Tsaltas, a GREAT doctor who truely wants to help & understands! I am in my late 20's and have suffered with endo for 10 years. After many surgery's to help with the endo they discovered i have Adenomyosis!! As you all know this is so painful!!!

My hubby and i are now really wanting to have children, we have been trying for a while & have had no luck! i do not want to leave this any longer to try for kids as we would be truely devastated!!

I feel i am so young to have this as i have been reading this normally happens to ladies in there mid to late 30's, and sometimes after children?? is that correct?

We will be discussing IVF and any other options available for us.

It is great how everyone here is supporting each other.. you all seem so lovely
& i wish everyone the Best of luck

[ccwa]

Such a long time since IK logged in that I had to get a new id and password.

After talking to someone else experiencing ando, I thought I should detail my journey to diagnosis, if it helps someone else.

'Ando' or 'adeno' is often misdiagnosed or undiagnosed for years and the consequences can be devastating.

My journey to diagnosis was a long & difficult one. Prior to having children, I had endo and a twisted ovary on which I had surgery. Falling and staying pregnant was difficult. After my 1st child, my first period 15months after birth was extremely heavy. I then had a very irregular cycle, skipping periods, heavy, light. I had two 'real periods' the heavy ones before I fell pregnant with our 2nd child. (dec 2002) (I always said that I only had two periods between the two children) [It was only later - with gyno's help - that I was able to recognise these others as periods.]

After my2nd child, I didn't get a period for 18 months. With my first (postbreastfeeding) period with child no: 2, my left leg blew up to twice its size and my right leg also swelled. I went to see a GP who told me it was because I was overweight. The next period my back killed me and it was very heavy. (Each period from then on either had painful leg swelling - from ankle to knee or excruiating back pain or both.) We started trying for our next bub and I had two miscarriages within 4 months. I had a D&C and my next period was really light. My obby told me to take a break for 6 months and lose some weight, so I did.

After losing 30kgs, I had the most horrifically heavy and painful periods. (They would last between 10-15 days out of 28, or be very light but very painful (material growing into the uterus) or be like labour.) I was told that this was often common with someone who had lost this amount of weight (body righting itself), so I didn't worry too much. Also my sibling had just passed away from cancer & I thought that this might be affecting me. (Oct 2007).

We tried to fall pregnant for 3months. As time was against me, I went back to my regular GP (who knew we were trying) in Feb 2008. She sent me for a scan, it took 1 month to get in to get scan. After the scan, the result was diagnosed as having ando. I had to get into a gyno, my gp's words were 'so, who do you want to book the hysto with?' (needless to say, she's no longer my gp!). It took from early March to May to get into a gyno, when I did he straight away booked me in for a D&C, histology and lapocrospy. Ando was confirmed at this point. (late May 2008). I had to take a month off trying to conceive. July 2008 period was great, August's was shocking!! We went on holidays in Sept and I couldn't face another period. I was going to have hysto in Dec 2008, but when we came back I discovered I was finally pregnant!! I cannot have anything until Dec at earliest according to obby, but will have to follow up with gyno to be sure. I am now considering ablation.

So diagnosis took 6 years (may 2002 to May 2008) - 3 years & 2 months if you take it from the first 'weird' symptom - the legs blowing up. I have since found out that this is a very common symptom - often misdiagnosed. Had I had a D&C just after this, I most likely would have carried to term a lot earlier.

sorry for the long story - but that was my diagnosis experience.

If this can help one other woman (or indeed family - this became so debilating that I had to take time off work, childcare duties, housework - basically life) it will be worth baring my soul.

[Marcella]

Hi- I just ran onto this discussion?.I realize it has been a while since anyone posted.
But if any of you are still out there?.I would like congratulate all the women that have posted that they were able to conceive. I am hoping to ask a couple of questions.
For those of you those were able to get pregnant?

1) Did you conceive naturally?
2) Did you have the horribly intense pain during the pregnancy?
3) Did you have any complications? during the pregnancy caused from this condition?


If there is anyone out there still reading, I would love to talk. My husband and I are trying and the pain as you all know is more than devastating.

Love and hugs to all!

[ccwa]

1) Did you conceive naturally?
Yes, at the advanced maternatl age of 41, we conceived naturally. I held my breath right to the end as I had so many miscarriages.

2) Did you have the horribly intense pain during the pregnancy?
I won't fib, yes, very bad cramping in uterus and also in back and legs. Irritable uterus was also mentioned.

3) Did you have any complications? during the pregnancy caused from this condition?
See above

Complications came after this pregnancy. My iron level was so low, and my uterus on the point of rupturing (even though I delivered naturally) that my obby and my gyno talked me about never having another period, as it had gotten too dangerous for my body to cope with another heavy period. I considered Mirena and Abulation - gyno was not convinved that they would work, so I am now recovering from a hysterectomy.

Hope this is of some help.

[Annie18]

Hi, my name is Annie and I'm 18 years old. I see that most of the discussion was held a long time ago, but I'm hoping that someone will reply to this.

About 4 months ago I started to experiance many irregular things going on with my body, so I visited my GP. I was suffering from heavy, irregular bleeding that could last upto 4 weeks, it would be induced from running, jumping and more often than not, sex. I experianced severe mood swings, constant fatigue, intense pelvic pains, diarrhea, extreme weight loss, migranes and very low blood pressure. My doctor told me that it was just part of being a teenager. I wasn't happy with this so I got a referal from another GP to see a Gyno. She ordered a D&C and Laparoscopy. Both confirmed that I had severe cases of both adenomiosis and endometriosis.

I haven't been coping well since the diagnosis which was about 2 months ago. They told me that the only permanent fix for the aden was to get a hysterectomy, but I'm only 18 and I'm one of those girls that has always wanted to have a big family.

From reading everybodies entries, a lot have said that they have been told to 'get on with it' in relation to having children because of their condition. But at this time in my life I feel as though I'm too young. I just finished High School and I got accepted to study at University.
I'm just so worried that if I wait until an appropriate age, I will have missed the boat completely and will have suffered with aden and endo for no point when I could have just had my uterus removed.

Should I get a hysterecomy or just save some eggs for the future?
I hope someone replies to this, because it's all very confusing.

Annie

[lisa13]

Hi, my name is Annie and I'm 18 years old. I see that most of the discussion was held a long time ago, but I'm hoping that someone will reply to this.

About 4 months ago I started to experiance many irregular things going on with my body, so I visited my GP. I was suffering from heavy, irregular bleeding that could last upto 4 weeks, it would be induced from running, jumping and more often than not, sex. I experianced severe mood swings, constant fatigue, intense pelvic pains, diarrhea, extreme weight loss, migranes and very low blood pressure. My doctor told me that it was just part of being a teenager. I wasn't happy with this so I got a referal from another GP to see a Gyno. She ordered a D&C and Laparoscopy. Both confirmed that I had severe cases of both adenomiosis and endometriosis.

I haven't been coping well since the diagnosis which was about 2 months ago. They told me that the only permanent fix for the aden was to get a hysterectomy, but I'm only 18 and I'm one of those girls that has always wanted to have a big family.

From reading everybodies entries, a lot have said that they have been told to 'get on with it' in relation to having children because of their condition. But at this time in my life I feel as though I'm too young. I just finished High School and I got accepted to study at University.
I'm just so worried that if I wait until an appropriate age, I will have missed the boat completely and will have suffered with aden and endo for no point when I could have just had my uterus removed.

Should I get a hysterecomy or just save some eggs for the future?
I hope someone replies to this, because it's all very confusing.

Annie