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Adenomyosis Support

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Adenomyosis, fibroids and life [Jul. 30th, 2014|03:35 pm]
Adenomyosis Support


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)
-bloated abdomen
-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.

[User Picture]From: lenkakash
2014-11-28 11:40 am (UTC)

Uterus must go

Thanks you are right. I completely forgot to update.
The Zoladex is not something I would ever recommend to anyone ever. It made me lose my mind. I became suicidal, depressed and still had pain and bleeding. I tried 3 months of it and have up. My mind improved and pain got less.
I think the zoladex was fighting my progesterone and making me worse.
Once a month I am in hospital due to pain. The bleeding is so much less. I can't miss a single dose of Primolute and take 5mg three times daily. As soon as I miss a dose I bleed.
I looked into MRGFUS treatment. It's a trial treatment for adenomyosis and there is DR in Melbourne who does it. If you want to avoid hysterectomy so bad maybe look into it. It costs to much for me to afford. Approx 6000. I chose not to do it as it's still a trial and some women reported symptoms returning after a year or 2. But maybe worth a try.
Otherwise hysterectomy in April.
I am in denial at the moment but feel it would really hit me when it's time.
I feel for ya. I feel for so many woman who go to hospital with adenomyosis pain and get judged as drug seekers just because there is so little knowledge about it.
If you go to hospital for pain try 5mg Endone and 5mg Diazepam. I find this works best and often takes pain away completely.

Good luck.
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