|Adenomyosis, fibroids and life
||[Jul. 30th, 2014|03:35 pm]
I have never been one to keep a public journal but this illness came along, slapped my life in the face and chose not to cooperate with treatments. |
I have started this in hopes that someone might read it, has gone through the same and can provide advice or support.
Or perhaps this can help others in my situation.
I am 27, married and fairly fit. Work as a nurse in mental health. I have always had heave periods growing up. Stared on the pill since about age 14 to try and help. They were heavy but I could live with them.
About a year ago they started getting even heavier. (I was put on Tranaximic Acid 2 tabs 4 times per day for 4 days of period at this stage) Stuck around longer and the pain just kept growing. Still I can live with this. Just glare at my girlfriends when they shared their menstrual discomforts as they have to upgrade to regular instead of light.
Feb 2014 my periods took a whole new meaning of annoying.
It started by lasting for 2 weeks, leaving for a few days and starting again.
I went to a GP who encouraged me to recommence on the pill (which I had stopped a few years ago) and started me on 10mg of Provera. This didn't help. My period continued until April. It had stopped for a few days and I noticed some spotting again. I then woke in pain which I can only describe as labour. Contraction cramping, sharp like a knife. I took any and all pain relief I could find and nothing helped. I screamed and cried so my hubby drove me to our amazing local hospital. I was admitted, treated for pain and had ultrasound in the morning. The sonographer told me 100% fibroids and possible adenomyosis. Despite being a nurse I didn't understand what this meant. I asked her. Her only response was "well huny looks like no children and a hysterectomy in your future" this tore through me. How can she say this. I'm 27. I have no kids. And I broke down.
Returning to my GP she sent me to a specialist for support.
At this stage my bleeding refused to stop. It wasn't extremely heavy but daily.
I saw my specialist in 2 weeks time. He really didn't suggest much at this stage. "Waiting list for surgery" on the menu: myomectomy to remove fibroids, laparoscopy, D&C and topped with dye studies in my tubes. He placed me into category 2 public waiting list.(wait list of approx 90 days) (Who ever listens to their parents and takes out insurance as their mum suggests? Not me!!) I was devastated after leaving. He gave me nothing to manage this now. So I continue. Bleeding daily. And it got heavier with everyday
I went to a naturopath who assured me she can help and support me with this. I signed up for a program which would last 16 weeks, for a tender price of $2000 not including price of herbs and treatments that she would prescribe. She put me on Tienchi Ginseng and Omf100 syrup. These cost me $50 each. After a week my bleeding was at its worst. I took to her again. She increases the Ginseng tablets to 2 tabs every hour. After 2 days I actually felt a little better and bleeding eased. So I went out with a friend. (Something I haven't done since my hospital admission as I live rurally and drive to see friends can take an hour with huge waits in their hospitals)
I had a great night. Stayed the night and then out of no where stared bleeding like nothing else. So strong it pushed out my tampon, felt like peeing blood and passing non stop clots the size of my fists. This happened about 6 more times in an hour timeframe. I lost so much blood I was dizzy and pale. I had taken a heap of Tranaxemic Acid 5-6 tabs and Nerofen plus about 5 tabs in that hour and it must have slowed the bleeding.
She drove me home and straight to my fave little hospital. They admitted me straight away. And transferred me to a bigger hospital. Apparently my haemoglobin(hb) dropped from 11-9 within an hour bleed .
The kept me for 3 days and stared me on Tranaxemic Acid 1000mg 4 times a day, Norethisterone 10mg 3 times daily. Told me to take these until surgery which was still 1-2 months away.
I took these as prescribed and it really did help. I had side effects. Mostly mood swings, hot flushes, and bowel issues.
Over about a month I continued this. Being human there was times I forgot the tables at this frequency and took less. ( I stopped seeing the Naturopath immediately and asked for money back to which she refused)
Then I was accidentally given a script for Provera instead of primolute as my GP was away. I read up on this and it appeared this medication is also used for these reasons and was also progesterone based so I thought I would try it. I was ok for about a week and then the bleeding took control again. I got Norethisterone again but it just wouldn't work.
I did get a call from the hospital though to say my surgery is 2 weeks away. I longed for it.
But I got worse and worse.
On a Sunday I felt my pain getting worse. I took Endone and put up with it. Monday 7:30pm the pain was uncontrollable. Contraction stabbing and felt like giving birth. I went to ED. My blood pressure and pulse where high due to pain. The attempted Morphine IV on a number of occasions. When this failed and I am bent over in labour type pains they suggested and tried Ketamine IV which made me lose my mind but nothing with pain. Ketamine was a frightening experience.
I suggested for them to perhaps try a Diazepam. Being an benzo and helping with contractions and cramps. They were reluctant but gave me 5mg with Morphine. About 40 mins later the pain stopped and I went home to wait for surgery in 10 days time.
Thursay at work I got that bleeding again. Pushing out my tampons every 5 mins, flooding and unstoppable. I ran out of work and drove my self to my lil ED again (thankfully only 5 mins from where I work)
They admitted me and freaked when the saw the amount of blood and clots that were flooding out of my body.
The hooked me up to fluids and morphine. They rushed me to a larger hospital via ambulance and I was admitted with my Hb dropping from 11 to 9. They decided to give me a transfusion. Put up 250ml of delicious 0+.
For anyone who knows Australia public hospitals I'm sure you know the kind of service you can get. At 7am after not seeing a Dr since admission. 3 drs came over and told me I was ready for discharge. I was shocked. My bleeding was still of its tap. Thankfully as I know some medical stuff I asked them about my Hb and if the transfusion helped. Turns out my bloods dropped to a further 8.7. The wrote up 2 more units of blood.
Luckily I was seeing the surgeon on this day who was due to do my Surgery next week. He was great. Took 1 look at my blood loss and told me my surgery in my small hospital will need to be cancelled as I am to unstable. He put me back on waiting list (which broke my heart) but offered to try and do surgery on emergency list. Just D&C and possible Myomectomy.
I agreed and went in for Surgery on the weekend. On waking I was told it was a little more complicated than he expected and he only managed to do a D&C. I went home the next day. With hospital booking me for my main surgery in 10days. I upkept my regular meds and the D&C appeared to help a little for 4 days only. The following Friday back in hospital for pain. Managed Discharged and back on Saturday for pain. Managed and discharged.
My long awaited surgery day came up 3 days later. I was desperate. My Hb prior to surgery was at 12 dropped to 9 post of.
Waking was painful. Really felt it. Wasn't seen by Drs until the next morning who out of all 6 Drs present, none of which were in my surgery. They told me 2or3 uterine fibroids where removed, not to much endometriosis was evident, some external fibroids remained and dye studies showed that my tubes were blocked so no natural births for me. (Again I start crying like a blubbering baby)
I was kept for a day and discharged on Panadiene Forte by a Dr who wanted nothing to do with me. I did have urinary retention but asked to be discharged anyway as I just wanted to be out of this hospital.
Thursday and Friday were in pain due to poor medication management. Bleeding was getting more heavy. Friday night I bled more than pre op. By Saturday I was concerned and hubby took me back to hospital. They changed my medication:
Back on Norethisterone 5mg twice daily, Tranaxemic Acid 500mg twice daily, Targin (for pain) 5mg/2.5mg, Endone 5-10mg break through pain and Panadol and Nerofen for regular relief.
I returned to my GP on Monday as I still haven't opened my bowel post op. She arranged an appointment with my specialist for that Thursday. Took me 6 days post op to open bowels.
On seeing my specialist again he again gave me very little. Told me the pain and bleeding could be post op problems or adenomyosis. "We need to wait and push through" I could have slapped him. That surgery had all my hope and now it sounded like it did nothing.
He suggested trying #Zoladex 3.6mg implant monthly for 6 months. This will put my body into state of menopause and hopefully stop bleeding and give my body a break for 6 months. It will also show us if this is #adenomyosis as bleeding and pain will return after 6 months. In that case we will be looking at #hysterectomy.
I purchased this implant and asked my GP to put this in a day later. (Prepared my husband for an emotional and menopausal mess of a woman that was about to greet him)
Ladies the injection is big and it hurts. Be prepared. My specialist told me to stop taking the Tranaxemic acid and Norethisterone with a couple of days after this.
I know Norethisterone can cause withdrawal bleeding so decided to stop this on Saturday as I still have a week off work. The bleeding and pain started increasing like crazy. I keep trying to manage it with pain meds only. The bleeding would get out of control at night in particular. With me having to get up at least on 5 occasions over night to change.
Last night the bleeding was at its worst. I had to change at least every 1.5 hours with flooding and clotting. I made the decision last night to get back on Norethisterone and Tranaxemic acid as I just can't handle this. Withdrawal bleeding is suppose to get better with time not worse. This is unbearable!!!!!!!!
Does this mean Zoladex didn't work? Does this mean Zoladex cannot help adenomyosis? I read that Zoladex can take approx 2 weeks to peak so will wait about 3 weeks and try to stop the meds again.
I am feeling an increase in hot flushes and head aches. Really bad headaches. That brings me to today.
Please ladies help. Has anyone gone through this? Is there anything else I can do?
I have not officially been diagnosed with adenomyosis as this was only suggested on the ultrasound but these symptoms lead me to believe I have it:
-labour type contraction stabbing pain (once a month)
-pressure on my bladder with frequent urinating
-affects on bowel and extreme feelings of constipation/diarrhoea during cycles.
-non stop bleeding despite myomectomy and uterine fibroid removal
-huge clots and folding particularly at night.
I know this post was huge but I hope it tells my story. I hope I can get some support and I hope my experience supports or just provides some understanding for others.
I will keep writing with how I feel.
Please help. I'm starting to lose hope.
I don't have leave from work at the moment for a hysterectomy and pray this is not the only answer.
|My Journey with Adenomyosis
||[Oct. 1st, 2013|10:24 am]
Hi Everyone, |
I just wanted to share my journey with you - so that maybe you can get some releif or at least know that you're not alone. It's hard because none of my friends, family, or peers have really heard about Adenomyosis, so I always feel really frustrated and alone when dealing with it.
It started with my journey to get pregnant. My ex-husband and I tried for 4 years. I was told my "unexplained infertility" was because I was fat. They didn't diagnose me with PCOS, they didn't diagnose me with anything except for "unexplained infertility". Which sucked - because it didn't make sense. Once chemically induced my cycles were "normal" and I ovulated "normally". We tried IUI and various other methods, but nothing. And honestly while I'm sad I didn't have a child, I'm glad it wasn't with him too. Small Blessings.
After my husband and I separated, I went to my doctor and asked him what we could do because when I wasn't on Clomid, etc, my periods were unbearable. AWFUL awful awful. I'm sure a lot of you can relate to the pain, and grossness of the periods you experience with Adeno. And I wasn't diagnosed yet at this point, even.
My doc sent me for an ultrasound, and it came back somewhat inconclusive - I had a small fibroid but they were not concerned about it. My doc however was concerned about the amount of pain and bleeding I was experiencing, so he sent me for an MRI.
After months of waiting to get it - I finally had my MRI. The MRI came back saying that it was partially inconclusive and that it appeared that I had Adenomyosis. My family doctor didn't feel comfortable treating this on his own, so he referred me to a GYN.
The GYN that I saw (currently see) used to be great - I had him years ago when I had cysts, etc. But now I find he rushes patients in and out. I ALWAYS wait at least an hour past my appointment time before I can see him,etc. So I always leave his office feeling uncomfortable and in Tears. However - it's difficult to get in to see another specialist and the waits are long and honestly if whatever he prescribes works - I guess I should suck it up right? Well that USED to be my attitude.
His initial solution was hystorectomy. Then I mentioned that I was previously attempting to have children and he said "oh well then not that". I asked him if I'd be able to bear children with this disease and he said "probably, I don't know."
So he put me on birth control.
After birth control.
After birth control.
None of them worked. Finally he goes "Well since you're a "bigger girl" you should just take 2, there problem solved."
Yes, problem was solved, HOWEVER I still spotted quite a bit - always around full moon (why? I have no idea...) - And I still had the PAIN associated with it - even if there wasn't the blood and gore. And my blood pressure skyrocketed to 165/120.
So. Yeah. Back at square one - I went to my family doc who put me on Blood Pressure Pills - which I'm not happy with. I don't want to be on those - but I also don't want to die. I just hate that everything that happens they just give you another pill to mask it. Eventually I'll be like my parents and require a duffel bag to carry around my medications. No thank you.
I went and saw my GYN and said "listen, this needs to end. I can't keep taking 2 bcp/day I'm going to have a stroke and die" so he said "well let's try an IUD!" and I was like "Um, but you told me that wouldn't likely work when I saw you 2 years ago, and that we shouldn't even try it" and he goes "I don't recall that, and it's worth a try - it might not work - but it might too, and if it doesn't fully work we can put you on a low dose pill with it and it should be ok"....
So I left the doctors office, uncomfortable and holding a prescription for a $350 "Let's try it!", and a pamphlet about the Mirena IUD. Several of my friends have this IUD and love it. But they're all normal, healthy, fertile women, who never have had a lady problem in their life, and their idea of a "heavy period" involves them having to but "regular" tampons instead of "light".
I read a LOT of information about it. Some good. Some bad. A lot about it not working for women with Adeno. A lot about it causing problems because Adneo makes your uterus shape different. A lot about it falling out with a heavy period. A lot...
And it didn't sit right - but I thought ok. I'll try it.
So I finally had a window where I could end the BCP and start a "cycle" so I did - and I called the GYN and I said "hey I'm ready for the IUD" and the girl says "oh he's gone next week, you'll have to come in on your next cycle" Um... no. I don't have cycles, this is the point. So I was annoyed and she booked me for November 7. And I started having reservations again.
I'm in a relationship with a man I've known for a long time. (He is actually on LJ, that's how I met him like 12 years ago lol). And I talked to him. We are very serious, and eventually do want to try to have a child, and another issue with the IUD is that it can cause infertility if it punctures something - but even if it doesn't I have to leave it in for a minimum of a year and who knows what will happen and blah blah I was stressed lol. So I decided after stressing about it for a long while that I would research "Natural solutions to Adenomyosis"
I had to weed through a lot of hippy bullshit (sorry if you're a hippy - I'm not meaning to offend you but it really annoys me when I'm reading about my "Delicate Moon Cycle" and Saving my "Moon Blood" to fertilize my plants...)
Anyway I came up with 3 things that apparently help:
Cod Liver Oil (and it's funny beause I've been avoiding Cod Liver Oil for so long)
Evening Primrose Oil (You take this CD1-14)
And Natural Progesterone Cream (Not the stuff the doctor prescribes you, the NATURAL stuff you buy at healthfood stores - or in my case, From Biovea on line.) (You use this CD 14-28)
I collected this information from several websites - dozens, and from posting on Facebook to my friends - because I have some lady friends that are highly into naturopathy and know a bit about this stuff... And I thought - Fuck it (sorry I swear), I'm going to try it!
So here's my timeline:
Stopped BCP on Monday last week. Called GYN on Wednesday. Got dicked around.
So I started my cycle on Thursday that was Day 1 of full-on heavy flow. Did my research on Thursday.
Started taking the following on Friday night:
1 x Cod Liver Oil (Jaimeson Brand, 300mg Cod Liver Oil with 400iu D3)
2 x Evening Primrose Oil (500mg per tablet - not sure the brand)
1 x 100mg Magnesium (Jamieson Brand, Highly Absorbable blend of magnesium sources)
My flow was heavy and gross (but not as bad as it has been not nearly) on Thursday and Friday.
I noticed a difference immediately on Saturday. I'd say my flow was moderate, and my pain had reduced. Over the last 6 days from Wednesday - today I have taken 3 advils total. Normally I take 3 a day.
Saturday Morning I took the same "cocktail"
And I do this morning/night and today - Tuesday following (day 6 of my period) I am lightly spotting. I have no (or minimal) pain, and I feel pretty damn good.
I am in shock. I have NEVER ever had a regular period - and I beleive I just had one.
The pain was totally manageable and bearable.
The bleeding was manageable and bearable.
Honestly, it was amazing.
Point of note: if you are on blood pressure medication - be careful. Cod Liver Oil and Magnesium both lower your blood pressure naturally - My BP since stopping the BCP and taking the supplments has dropped to 111/64 (I'm on blood pressure meds, I don't want to stop them without talking to my doc, but I'm seeing him thursday, because I don't want to die haha)
But seriously ladies - if you are at your wit's end, and you are otherwise failry healthy (Note: magnesium should not be taken if you have kidney function issues), you should give it a try - what have you got to lose?
|Anyone nearing Menopause?
||[Aug. 16th, 2013|05:20 pm]
Hi and I have a bum, tired, diseased uterus. LOL I was diagnosed with Adeno. maybe 5 years ago and it has gotten worse of course. I never had any symptoms other than heavy periods and suddenly, my pelvis hurts 24 - 7. I look pregnant and don't even recognize myself. I've been told I have Fibroids and Cysts. Now, normally, anyone would say GET A HYSTERECTOMY! Right? Here is the thing, I"m 47 and soooo close to Menopause. My doctor told me after M, this usually clears itself up. She wants to give me the Mirena IUD to help with periods. I have really bad anxiety and of course, this isn't helping!!! I"m terrified to have surgery. I had a C Section with my only child and had a horrible experience with the drugs to numb me. Does anyone have experience with the Mirena? THANK YOU!!!
||[Apr. 11th, 2013|07:57 pm]
I had a laporoscopy last year for suspected endometriosis after many years of pelvic pain. Only a tiny amount was found but the surgeon noticed a bulge on my womb and suspected adenomyosis. An MRI last November confirmed it.
I had a sub total hysterectomy 3 weeks ago to remove my womb. I am 30 and do not have any children and have never wanted them.
Has anyone else had this treatment for ademomyosis?
I'm still quite emotional about it all and not sure it's really sunk in yet as to how major this op was/is. Would really help if anyone else who's had this that I can chat to as none of my friends really understand.......
||[Feb. 14th, 2013|02:44 pm]
After a decade of pain and multiple doctors I was diagnosed with adenomyosis two weeks ago at the age of 29. I've been on continuous birth control for a long time to control the pain that comes with periods, but I have daily vaginal pain and intercourse with my husband is impossible because it's too painful. My doctor has said there's really not much else to do except wait until we're done having kids and have a hysterectomy, but I can't wait that long! She said pelvic floor therapy MAY help, but she just doesn't really know. Has anyone else tried this and has it helped the pain at all?|
||[Jan. 21st, 2013|09:53 pm]
hello my name is marnie and last year i was told that i had adenomyosis after test on my hip ..|
but when i asked my doc for some info he told my to google it..
i dont know much about this and i am scared if i can have kids or not ( i am 32 yrs old) .
if anyone can give my some info that would be great...
i have read some posts and i can understand the painfull periods ut mine r not heavy and only last a few days... that if why i am so confused and scared.
|Pain FINALLY Explained!
||[Jan. 12th, 2013|04:42 pm]
My name is Mandy I am 32 years old and I am newly diagnosed with Adenomyosis and endometriosis. I am in the military and have been struggling with unexplained, debilitating abdominal pain for going on 8 years. I have always had heavy, painful periods, and I have had every blood test and multiple ultrasounds with no diagnosis. I have been sent home by many doctors telling me that I was making up the pain and I should be on antidepressants. I finally found an OB/GYN that took my pain seriously and on Wednesday she found, during a laparoscopy, that not only do I have endometriosis, I also have adenomyosis. After 8 years of complaining about pain, and feeling helpless I finally have a diagnosis. I have two children, and had not planned on having more so a full hysterectomy is not out of the question for me. I will have to have my ovaries removed also due to damage from hemorrhaging cysts. My question is there any reading for spouses on this disease? I do not believe my husband understands the awful pain I experience. Intercourse is completely out of the question for me right now. I have such intense pain and bleeding afterwards many times I have had to go to the ER and get IV narcotics. My husband says he understands, but I really don’t think that he does. Not only is this pain physically painful, but emotionally I am a wreck. I used to be a runner, and now I barely make it to work most days. Any advice would be great!!
|Glad to see there is a support place for adenomyosis.
||[Sep. 9th, 2012|07:00 am]
I've been suffering with endometriosis and adenomyosis for many years and all the stuff that comes with it. I can honestly say the journey is not just dealing with pain but an emotional recovery. It's nice to know there is support like this out here. Thanks to all those brave enough to share their stories, as you are all inspirational and courageous to me.|
|Hysterectomy the only answer??
||[May. 21st, 2012|05:18 pm]
I am very happy to find this group, and know there are many out there that understand what I am going through.. I have also suffered with severe pain. I have never had a "normal" period. irregular and heavy since childhood. My obgyn told my mother that it was very doubtful I would ever have children due to the fact even with medications and birth control pills we were never able to regulate my cycle or control pain. As a young woman I remember having cramping so bad I thought I might die.. Heating pad and pain meds helped, but not completely. As I got older, the problems did not go away. I was able to conceive and have 4 beautiful children over the years, but no Dr could ever tell me why my cycle was so messed up, why I bled so long and so heavy, and why the pain never went away and no matter what we tried, nothing helped. This last year (2011) I finally had enough. A friend of mine had had an "ablation" and she LOVED it.. No problems, no periods, nothing. I was skeptical, but knew I could not take anymore of this. At 38, I knew I would not have any more children so an ablation would be fabulous. After speaking with my Dr (who actually recommended a hysterectomy first before agreeing to talk about ablation) I decided that it was what I wanted. My Dr could not do this procedure, so I was referred to a specialist in my area.. He went over all my information, spoke to me at length about the procedure and made sure I was aware of everything. I decided this was what I wanted, instead of a hysterectomy which required so much recovery time. I had my ablation. The first few days were painful, but not worse than I had had during some of my "bad" cycles. After a healing time of about 9 weeks, there was no more bleeding or discharge, and most wonderful of all - NO pain!!. For 11 months I did fantastic. Then out of the blue - Horrible pain.. I thought it might have been stress induced as I had been going through a horrible time with my son being very ill and needing several surgeries. I waited it out a couple days, but the pain did not go away. It did lessen, but I felt like I was in early stages labor. I also had some spotting, and felt like I had to go to the bathroom constantly. I was worried that something was horribly wrong.. Infection, tubal pregnancy (this can still happen, just very very rare according to my Dr), anything.. Once I was seen by my Dr, he did all the normal tests for bladder infection, ect ect.. We even did a biopsy to check for unseen issues as he thought my uterus "felt" abnormal. He then sent me off to have an ultrasound. Once all the tests came back, I was once again asked to see a specialist. Once there, I was informed that I had Adenomyosis and several cysts in my uterus. They had told me a few years ago that I had fibroids, but the Dr said "no, they are cysts." and apparently the spotting and severe pain was from one of the cysts bursting. After a long visit with the specialist, and another round of exams and other tests, he told me of my options. He did say birth control may help, "but with your history of issues and the fact that it did not help before suggests it will not help this time either." He also said I could try lupron, but that he felt it would only offer temporary relief. he went over all my options and said that although some of them may help, only hysterectomy will provide the "cure" for this unless I could make it until menopause then most, if not all, of the symptoms "should" go away. But if I am anything like my mother and grandmother, that will not happen until I am well into my 60's.. Not sure I can take 20+ more years of this.. after weeks of taking medications I am getting to the point that a hysterectomy may not be such a bad option. Is there anything anyone has tried that helped them get through the day to day pain? I have to work, and taking the time off for the hysterectomy is going to be very difficult. After discussing it with my husband, we have started trying to set aside the money to get us through the 8 weeks I will have to be off work, but I do not think we will be able to do this for some time. I have been on the net scouring for information and reading articles about anything dealing with adenomyosis, but I feel that if anyone would have a good understanding of what I am going through and what could possibly help me with this would be other women that are or have experienced it.
Thank you for any help or information you have. And thank you for sharing your stories with the rest of us. After reading several I no longer feel all alone in this horrible place that no one can understand (my poor husband tries, but I think he thinks I exaggerate the pain..)
|I need help
||[May. 10th, 2012|08:28 pm]
My names Katherine and im 19 (20 in august)
I have just been diagnosed with Adenomyosis and i'm not too sure what to do, as I am so young and the age range for this disease is 30+ and have already had children.
I would like a family of my own in the future but have been told to start it early, what exactly does that mean? now?
I wouldn't mind having a family next year, I have been with my partner for four years, but everyone agrees that im too young right now as so do I, but if it helps my chances of having a family then should I?
I have had problems since i was 17 and some say it grows and affects fertility and some don't, just mixed emotions and messages.
I am planning to go to university starting in 2013 to do midwifery.
Thought I would get help off people that have the same disease as i do.
Please help and give me some advice, thankyou so much!!
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