Adenomyosis & me..

I decided it was time to my blog something that seems to unfortunately evolving into an ever-growing part of my life.

My plan is to add to the theory of the condition (below) over coming months with some insights to my own experience, you never know it might be helpful information to someone. To make things easier I will group all posts related to this within the category of ‘Adenomyosis’ so it should be easy to search for them should you wish to.

Part 1 – The science bit

Over the last 2.5 years I have spent a lot of time looking on the internet to find women with a similar condition to me, looking for something to provide some reassurance or comfort. Most of the time I have found a little of what I have been in search of but there isn’t actually that much information out there, so I wanted to do what little I could to help. You never know someone might stumble across my little blog looking for some reassurance too and just maybe I will be able to help someone in return for the support I have found.

Now if you happen to be a male reader you might not want to read any further…I have to say this area of my blog is even more girly then the standard stuff…haha. Sorry to any subscribers of my blog who have no interest in this stuff.

I think its worth starting with a definition;

“Adenomyosis – is a disorder where the endometrial tissue lining the walls of the uterus exists inside and grows into the muscles of the walls of the uterus. This disorder occurs mostly in the late stages of the childbearing years as well as after the woman has had children. What causes adenomyosis is not known, but the illness normally vanishes after a woman is in post-menopause. For those women who have the more severe pain from this disease, there are opportunities for treatments which may help but the only total cure is to have a hysterectomy. “

Symptoms;

* Prolonged as well as heavy menstrual bleeding

* Piercing, scalpel-like pain in the pelvis as well as severe cramping.

* Cramps which last thru out the period .

* Pain while having intercourse.

* Passing clots of blood during the period.

* Sciatic nerve pain

* Bleeding in between monthly periods.

* The uterus can increase to almost double or even triple its regular size.

 

Part 2 – Whistle stop tour though my story so far…

To start here is the summary version of how I was diagnosed and where I am in my journey so far.

* January 2010 started with Pelvic pain

* For several months this was treated with strong painkillers and to be honest I don’t recall too many details of that time

* By the summer I had undergone several tests to see if it was related to my Coeliac disease and an issue with digestive system. Every test came back clear …still not idea of what was causing the pain.

* In the July I ended up being taken into hospital with server pelvic pain and ended up spending a week in hospital mainly so that I could have pain medication that even eased the situation. During this time in hospital they decided it couldn’t be related to my stomach and I was discharged from my consultant.

* Thought-out the autumn and into the winter I coped by taking a lot of painkillers and anti-inflammatory tables, nights in on the sofa, weekends staying in bed and waved good-bye to my social life. Then one day my GP decided it was time to refer me to another specialist, it was going to take 16 weeks unless I was willing to go private. At this point I had been suffering for nearly a year so I was willing to try anything to get my life back.

* The new speciality suggested repeating some of the same test (more ultrasounds, bloods etc) and a laparoscopy (type of surgical procedure that allows the surgeon to access the inside of the abdomen and pelvis). Having never had surgery before I was a little nervous but keen to find an answer to my pain I was happy to proceed. So finally in January 2011 this took place.

* My surgeon had expected to find endometriosis but found none of this. Instead he consulted ‘ expected Adenomyosis’.

* Treatment for this was a different cocktail of painkillers, and fitting a Mirena IUS. I was sent away in the hope this would sort everything out over the next couple of months.

* Suprise surprise it didn’t resolve all my problems. While it had resolved some symptoms it made little impact on the pain. Before long I was back in the doctors office next to try 6 months of back to back birth control pills.

* Although this treatment was unsuccessful in the longer term it did provide me with a couple of months of lighter pain during the summer of 2011. This was a huge relief as I was growing very tired of the situation.

* By Christmas my consultant advised a repeat of my ultrasounds and more distressingly a repeat of the laparoscopy (the experience of this is worthly of a blog post in itself and one for another day).

* This time my consultant was more certain that my condition was Adenomyosis and after the surgery confirmed there was nothing else he could do for me if I still wanted to have children. The only treatment he has left for me was a hysterectomy. Now while I really want to get rid of the pain I am 28 single and do want children so this was not an option.

* Therefore it was time for a second option…my new consultant received all my notes but not the diagnosis from the previous doctor. This was intentional to ensure he came to his own conclusions…the results were the same; Adenomyosis.

* However my new consultant did give me some hope. He suggested trying Prostap known as a gonadorelin (LHRH) analogue. I was allowed only a 6 month cause after there is a risk to your bone density as the decrease that occurs within 6 months is fine and can be repaired by ofter 6 months there is a risk is cannot be reversed. In short the injection (1 every 3 months) creates a chemical menopause. Month 1 – bad, Month 2-3 = good!!!, month 4- 5 = bad, month 6 = horrid!

* That brings us up to date..current taking lots of pain killers, getting little sleep, 5 doctors appointments in a period of 3 weeks and back at the hospital next week! Fingers crossed for a new idea???

I hope the above is useful to even person, if anyone has any questions please feel free to ask and I will answer honestly.

xxx

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25 thoughts on “Adenomyosis & me..

  1. I have had the same as you. I started with endometriosis, which they cannot remove due to its location and joy bulky uterus which is caused by adenomyosis. I’ve had the mirena with no joy, prostrap monthly injections for 3 or 4 months and can honestly say that was the biggest living hell of my life. It made me suicidal, erratic in thoughts and behaviour, I developed insomnia and finally vertigo so bad I couldn’t drive if leave my house, it was hell! I don’t feel I have been normal since that. Currently I am just on heavy pain meds, but these chronic conditions are really getting me down. My work life and personal life is affected by this terribly and people aren’t always sympathetic as they often don’t understand and think you have a slightly painful period. Until they hear you howl, scream or throw up on the pain, sometimes passing out suddenly, they just don’t get it. There isn’t a day in the month that these conditions don’t affect, at times they make you feel like you are going crazy! The medical profession aren’t that sympathetic either. Hysterectomy being the only cure. If men suffered from this or it killed you they would’ve found a cure by now!
    Good luck on your healing journey, fellow sufferer.
    Om Shanti, Om Peace xx

    • Hi, I am so sorry I haven’t replied sooner, almost 4 months late isn’t good! I honestly hadn’t see a comment had been posted until another comment was made last night.
      I hope that in that time you have found a medical professional that will help you? I agree you can’t just be left like this but I know from talking to other ladies suffering with adenomyosis and endo that they are left to just suffer on too may occasions. Worst still women are pushed into having a hysterectomy only to find it isn’t a sure cure (yes it does work for some but there is certainly no guarantee). If I can offer a sympathetic ear I can promise I will look out of any new comments just in case it would help you to have contact with someone that understands because after 4 years of different treatment plans, cocktail of drugs I know how it feels to feel like a guinea pig and also the other side of things – I am tired of hearing ‘you don’t look sick’..
      On a positive note while it is a horrible chronic condition to have I do take time to remind myself that there are people out there that suffer and struggle with far worse.
      Good luck and I really really hope you have found a treatment that works for you since you made the comment (sorry once again for the slow reply) xx

    • You girls need to find an certified excision surgeon. There are only 10 or 12 in the. Country and excision is your best option. Join Nancy’s Nook on Facebook for more info and a list of doctors. The nook is your safe place for wonderful info and support from women when have live your story.

  2. Hi , I too am going through what you are experiencing. I’m on my 5thinjection of prostap but the pain is returning after having 2 pain free months. Is this what happened to you??
    I am awaiting hysterectomy in a few weeks so the pain returning is helping me in a way, as I was starting to change my mind about having surgery. I’m 40 and luckily had my children before I got too ill. Im scared of opp and losing everything as they are taking ovaries too but I just want my life back now. I love exercise and have turned into a slouch this last few years too tired and uncomfortable to do anything and when I try it hurts more.
    I hope things work out for you

    • Hi, thank you for taking the time to comment on my blog, I haven’t written must lately as I didn’t think it was being read any more. Incase it helps I have been on the Prostap injection just over 2 years now (maybe a little longer I lose track of time) and have had a further surgery last December, they found my Sigmoid colon was fused and basically strangling my left ovary…at least it helped explain the pain. The surgery separated the 2 but hasn’t solved the problem unfortunately infact it has now caused me to have additional problems digesting food, they explain this as my colon going through a trauma but still doesn’t exactly make sense. Anyway I am sure you aren’t interested in that side of things and I’m just rabbling now sorry.

      I do understand your concern about the surgery, it is often offered up as the ‘solution’ however I think you need to be ready for it in your own mind and as yourself would you still be happy with the decision even if it isn’t the perfect cure? The only reason I say this is a friend of mind had a hysterectomy and I don’t say this to scare you but they didn’t manage to remove everything and as a result she is still debilitated by the pain from whats still there. Remember its your own body and trust your gut as to what you feel comfortable doing.

      If I can ever offer any support or you want to discuss anything from your condition further I am always happy to share/ listen..not that I pretend that I have all the answers, I really don’t but I do know how lonely this can all feel. Good luck if I don’t hear from you again, I hope you find a way forward that allows you to get back to what you love.

  3. Hi I have spent 5ish years of my life of Drs testing me,scanning me and pumping with me full of every hormone under the sun! All I get is “your bodies odd” or “your weird!” But no fix just more 3month hormone treatments. It started with migraines then I had my first child (csec) and the odd bleeding then second child pooped along (also csec) and that was almost 3 yrs now and I’ve been bleeding heavily (3/4weelks in th month), cramping badly and passing out non stop but still no doc will come to a conclusion. But thanks to your blog I feel like I’m not the only 1 going through this! I’ve booked a private consultation. Thank you for posting this. Happy you finally got your conclusion.

    • Hi, I am so glad you found the blog helpful in some ways. I know what its like to feel alone in this crazy world of hospital appointments and hormones but through blogs and social media I have found some true friends who are always there and understand how it can feel on the really tough days. Remember you know your body better than anyone else so don’t let a drs tell you ‘your weird’ or that ‘its all in your head’. I wish there was an easy conclusion to this disease or a way to resolve it but unfortunately it seems to come with daily surprises 😦 x

  4. i just got back from yet another appointment from my doctors and yet again i leave with more questions than answers! i am in constant pain, i’ve had the laparoscopy also and they found nothing so ofc they have told me its adenomyosis and theres nothing they can do as i want children. so it is now a pain management situation. i have been on mirena about 12 months and pain improved for a short time and now its awful again. are the injections helping with your pain and symptoms ? As its basically my only option now! anyway was really happy to found your blog as i literally have been crying all morning and eating cookies haha 🙂

    • I hate to here the sadness in your message but I am so glad you sent me a message. Obviously evert treatment is different for everyone but for me it really helped. In fact for the best part of 2 years it made a considerable difference. I would say watch out for the side affects & if they offer your HRT with it I personally would take that option. I don’t want to bore you with too many random details but if you have any questions please feel free to ask x

  5. Thank you for sharing your story. I’m so sorry to hear of your pain and frustration- I understand 100% how you feel. My story has some similarities to yours- I have a prelim diagnosis for adenomyosis and get recurrent cysts on my ovaries. It all wreaks havoc on my body.
    I finally scheduled my hysterectomy last week for early April because I have come to the end of my rope. In the last 3 years my doctors and I have tried everything: Prescription painkillers, birth control pills, Mirena IUD (helped a bit for only 7 months), medical marijuana (helped quite a bit for a while), dietary changes, homeopathic supplements, pelvic floor physical therapy (helped for a while), laparoscopy exploratory surgery for suspected endo (found none), valium suppositories, opium/belladonna suppositories (I kid you not)— I have not been able to find relief that lasts long enough. It always returns with a vengeance, and I am so exhausted from all the research, pain, fatigue, general unwellness, not knowing how I will be feeling from day to day– I am especially tired of family and friends completely not understanding what I am going through and thinking I am being dramatic or that it’s somewhat in my head. I’m sure you understand.

    I had two children in my early 20’s (I’m 33 now) but still was unready for a hysterectomy until recently– it is a big decision. And one that I can absolutely understand you not wanting to move forward with if you want to have children.
    As I have attempted many different holistic solutions I would be happy to give you any info that might buy you a little time. I know some people are not comfortable with medical marijuana as a treatment, and many don’t have access to it yet, but I will say that is one thing I have done that has helped the most for inflammation and pain. There are many products available- many that don’t have any THC (which is what makes you “high”) but are derived from hemp with a high concentrate of CBD- most places allow you to buy this without a medical marijuana card because of no THC. CBD has been scientifically proven to interrupt the inflammation feedback loop in your nervous system. The physical therapy is also worth looking into– often times our inflamed enlarged uterus triggers problems in the pelvic floor muscles surrounding it and the sciatic nerve that create outrageous muscle spasm pains and pinched nerves. A good PT may be able to help with this.

    Sorry for the long winded response– but I hope some of that helps.
    If there’s any info I can send your way I would be happy to.
    Best wishes and hope you find some relief!

    • Hi Kristin,

      Thank you for taking the time to comment on my post and for all the support and understanding you have shown. I’m sorry to hear you have had such a difficult time and such a story to tell. I am very happy however that you have 2 wonderful children before of having to face the hysterectomy – have they reassured you that the operation will resolve the issue or is there only a chance it will lead to an improvement? I am sure its something you had given a lot of thought too and hopefully you have a good support network around you to allow you to recover both emotional and physically from the operation.

      I would be really interest to hear about any holistic solutions / suggestions you may have that could help manage the symptoms / pain?

      Thank you again for taking the time out to message me. Good luck with the hysterectomy & I wish you a speedy recovery x

  6. Browsing all over the internet with asbestosis as the keyword and I found yours, I’m so grateful!

    Yesterday I went for MRI since my heavy and prolonged bleeding doesn’t stop no matter what. I was suffering since I was 15 and now I’m 21. I was diagnosed by fibroid but it was vague, wasn’t sure I tried for another opinion and the diagnose came out that I’m having asbestosis. 6 years back then I didn’t feel any bad pain, I mean it’s still bearable but the heavy bleeding still and it cost me so transfusion during the 6 years. Yesterday I got my first gnRh injection, and will start my healthy lifestyle from now on.

    What about you now, what kind of medication you’re taking now? Glad to share 🙂

    • Hi Grace,

      Thank you for taking the time to comment on my blog. I haven’t posted in ages (years) as I didn’t think anyone was really reading it any more but I still love to read the comments if/when they appear. I’m so sorry to hear you have suffered for so long without a real answer, half of the battle is keeping going and having the strength to trust your own body and to keep asking the doctors to think again.

      As you adjust to the gnRh feel free to ask me any questions, I might not have the answers but I’ll always try or atleast share my experience. I am still on them now, I actually have the 3 month dose every 10 weeks now as I feel it wearing off after around 9/10. Atleast for the first 18 month it was amazing and helped me for the whole 12 weeks. To be honest I couldn’t cope without it now, that and the coil that controls my bleeding are a god send. I’m far from pain free but I don’t take for granted what a difference they make.

      I wish you a huge about of luck with your treatment, I’d love to hear from you again. x

  7. It’s been years of constant pain , failed relationships , depression , frustrations and sometimes Suicidal .
    I have. Been suffering since I was 16 .
    Noone knew what was going on till 2 years ago .
    I’m 29 this year that’s 13 years of suffering .
    I was diagnosed with Fibroid , Adenomyosis- Endometriosis , polycystic ovaries syndrome .
    It got some bad 2 years ago that I couldn’t move , stand or sit for 10 mins .
    I was forced to sit .
    I couldn’t stay at work .
    Let’s not talk about the failed relationships )
    I spent a fortune trying to get to the root and skip the pains .
    I had to travel to London for consultation and treatment .From Africa ‘
    I had the mirena coil inserted and a shot ( menopausal ) which helped for a while but the side effects were a handful …Acute depression , insomnia , Hot flashes , nights sweats , repeated PID
    I gained 3 stones and hated myself .
    Bled for about 3 months then had no periods for 6 months I think . It was a relief as I had always suffered from Anaemia due to heavy periods and clots .
    I couldn’t control the weight gain and I thought it was time to take the mirena out after a year .
    Now the pains are back and I’m suffering from Sciatica.
    Looks like the earliest symptoms before my diagnosis are suffacing again .
    Now all I hear is you are always sick .
    Why are you so Slouchy
    I have not had any kid and it’s been my dreams to have at least one .
    The suffering is getting unbearable and I’m tired of loading myself with pain killers .
    My periods are way heavier these days, messing myself up in public as I have to change my super plus tampoon every 1-3 hours and not to mention , I pad my panties with heavy cotton wool after wearing tampons .
    Nobody really understands the gravity .
    Constant migraine , pelvic pain , Sciatica , bloated stomach etc .
    There’s really noone I’ve met that is going through something that I could talk to .
    Noone understands . I can’t function well and I’m mistaken for Lazy .
    Does anyone also have polycystic ovaries syndrome ? Do you have acne cyst ? My face is dotted all over

    • Hi Jess, I am so so so sorry that I have only just seen your message. How are you? Has there been any improvements since you messaged? I can identify with a lot of the comments/ symptoms and ‘relationship side affects’ you have listed. Have you found a doctor as yet that is willing to listen and help? x

  8. I have a lot of bloating with my adenomyosis. I usually am not very bad in the morning but by the time I’m going to bed I look pregnant. I also have a lot of pressure in my lower back when I’m like this. I’m just wondering if anyone else has this happen to them and would my uterus fluctuate in size like that?

    • hi, I am so sorry that I missed this message when you originally set it. I hope you have found some answers just in case I can 100% identify with these symptoms. I cannot tell you the scientific reason this happens but I can 100% confirm it happens to me. I have found that a hot bath is the best way to help ease the systems when this does occur x

  9. I’ve been googling adenomyosis and haven’t been able to find many stories that connect with me but Im glad I found yours. My doctor just told me today that I have it and I had never even heard of it before. I feel like compared to you and the other womens stories that Ive read I’ve had it easy. I only just started having pelvic pain in the past couple months, just a slight twitching that has steadily gotten more frequent and intense. But it does not happen during my period. I haven’t had menstrual cramps in years, just migraines. Ive also had some irregularity with my periods and spotting but no really heavy bleeding. Since we are planning to start trying for our 4th (!) child next month the doctor wanted to get a transvaginal ultrasound to make sure everything was ok. Didn’t really hurt during the ultrasound (except weirdly at the top of my right thigh) but for the past 3 days since then I’ve been in some intense pain. I have no idea if it’s related but I have pain down my legs, into my feet, and even my hands. I saw in your list of symptoms ‘sciatic pain,’ is that what that is? I’m just starting to look into this and I’m so sorry to see all these stories of pain like this that goes on for years, I can’t even imagine. I’m just confused why my symptoms seem so different from the norm, should I get a second opinion? I’ve also read that adenomyosis can’t be detected by ultrasound, so how can my doctor so confidently say that’s what it is? I have so many questions but I’m just starting this journey, thank you for writing your blog so long ago so that people like me can read about your experiences and have a better idea of what to expect.

    • Hello, i’m so sorry to hear you are suffering. It is a minefield to work out the source of a lot of the symptoms and often more difficult to get them recognised as part of the same condition. I suffered with sciatic pain in my leg for a long time, years and years and then finally earlier this year I was able to have a spinal block done which so far has kept this pain at bay for over 8 months (other than the odd bad day here and there). My key advise would be you know your body best so don’t ever give up on trying to get a 2nd, 3rd or 100th opinion if you are suffering and it doesn’t feel right. If there are any questions I can help with or even just wanted to share I am more than happy to help in anyway I can. I know how much it can make a difference to just find 1 person who understands even a little bit.
      Take good care of yourself and please message back if it would help at all x

  10. I find following a vegan, sugar and wheat free diet and taking cannabis oil every day works wonders. I have had no pain or no bleeding since following this plan. The womb also holds unresolved pain, trauma and memories and I have read adenomyosis is associated with :

    Adenomyosis Unresolved pain and agony over one’s childhood, and/or the children one has had or not had. Agonizing over the sort of parents one had or the sort of parent one has been

    I have found meditation very helpful and have actually communicated with my womb and uterus and gained deep insights into the causes and why this disease has chosen to present itself to me.

  11. Hi, I have just been diagnosed with Adenomyosis. My consultant has prescribed Prostap along with oral HRT. I must say, I am terrified. I have suffered with the most horrific pain and heavy bleeding for years, but it has progressively gotten worse over the last two. My breasts swell to thrice their normal size, funny as it may sound, but not going to work/meetings because you cannot fit into your clothes is a total nightmare. I have tried every possible natural remedy known to man, but to no avail. My PMT is more PMDD, my poor husband has suffered, I feel so guilty.

    My main concern is the effect the treatment will have on me as a person. I have read so many horror stories online, I am seriously considering not going on Tuesday for my first injection.

    I do not, at present, feel I have a life?! I feel in a perceptual state of PMT ,and just cannot cope with the symptoms!!!

    I am 44, no children ( lifestyle choice) any advice would be gratefully appreciated…

    Much love and positive thoughts
    x

    • Hi, I’m so pleased you reached out and shared how you are feeling about the Prostap injection and the HRT. I had exactly the same worries and felt like there was no one I could ask for advise. When I was told about it I was very nervous about it as the Drs don’t have too much time to tell you about it or educate you. Obviously side affect are different for every one, both to the injections and to the HRT but its about finding that balance that works for you. I personally get side affects from my injection for the first 2 weeks (I have 1 injection every 3 months) and unfortunately I cannot wait the full 12 weeks for the next 1, my Consultant advised that I have it every 10 weeks otherwise my pain is too strong and actually the amount of pain meds it takes to keep the pain at bay is more damaging that having the injection more frequently.

      I am happy to tell you about the side affects I have if you think that would be useful or if there is something specific you are worried about I can share my view point/ experiences.

      What I will say is the injection has been life changing for me, maybe I am a lucky one but it has kept me going, I have had it every 10 weeks for approximately 3 years not (and I have the HRT) and my biggest fear would be being told I can no longer take it as it gave me my life back.

      xx

  12. Hi ☺,

    My name is Melanie and at the age of 30 years old and recently been diagnosed with Adenomyosis and Edometriosis. When i got my first period at 12 was painful 18 years later i now can no longer move the pain is that bad the nausea is worse and now impacting on my social life and work life. For the last 18 years no doctor w poo uld listen to me saying it was all in my head anf part of being female. My docotor called me silly and told me i was wasting his time to find something wrong. I got a second opion, had inr er nal scan and just seen a gyno. I am at the point were i have not had ki da and if the mirena and D&C and remvoing the polyp dose not work I am left with no chioic but to have a hysterectomy and that scares me as i have not had kids 😢. Wo i am hoping the mirena helps the symptoms and i have a chande to have a baby. Gyno said rare in young women who have not had kids as Adenomyosis happens to women after they have had babies. I was born with it. Thanks for having this blog makes me feel better to read (sorry anyone has Adenomyosis) my firends do not get it and say th er e is other options this disease just takes over your life with silly symptoms. Thanks Mel

    • Hi Melanie, I’m so sorry to hear you are having such a tough time with everything. I can certainly identify with a lot of the things you have said. 1 of the first doctors I saw said my only option was to have a hysterectomy & I am so glad I pushed to try all other options first before going down that line. I really hope that the mirena cool gives you some relief of symptoms, even if it doesn’t resolve everything it might just buy you some time to really think things through. The last thing I can imagine you want to do is rush into anything.

      I haven’t updated my blog in a while but if it would help in anyway or if there are any question you may have regarding the treatments I have continued to have I would be more than happy to answer them as I know how much I struggled to find anyone to understand.

      Sarah X

  13. Hi, I am the mom of a young woman with adeno. My heart goes out to all of you? Has medical marijuana helped anyone with the pain? Has anyone had the Osada procedure to remove adenomyosis? If so, was it effective & how are you doing? Thanks!

    Shosh

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