Fibroids And Heavy Bleeding

[KP the nut]

I am 53 (well 54 in 2 weeks) and have been having irregular periods for years. Most days I would spot or the bleeding would be heavy with clots.

I went to see my GP after having continuous heavy bleeding and massive clots for 7 weeks non stop. She prescribed me northisterone (5mg) 3 times a day. I was also referred to a gynae assessment unit. For 2 weeks the bleeding stopped, then last Tuesday I had a massive bleed. By the time I made the bathroom, I had left a trail of blood and clots, I was terrified. I phoned my Hubby and he came home. I was cleaned up and went to see another doctor that afternoon. I was cramping and had back ache.

The doctor was a locum and he didn't know what to do. He phoned another doctor who wasn't any help either. He looked in his books and on the computer. Eventually, he phoned the hospital and managed to get me an appointment for 9.00am the following morning.

After 7 hours of varying tests and internal examinations I was told I had a large fibroid at the neck of my cervix, which was also 9cm dilated. It would need to be removed and if unsuccessful I will need a hysterectomy.

Although I am still cramping the bleeding was under control, until today. Another bleed and clots although not as bad as last week. I am hoping it will settle down as Hubby is away tonight.

I am having a pelvic ultrasound on Friday. I have my pre op procedure on the 13th and then the actual op on the 21st. I am very anxious about it all. I am using all of my coping tools to stay calm but it is a struggle. I have bought new essential oils, bought 4 books from my Kindle wish list and put calming music etc on my iPod.

Any words of wisdom from someone who has had similar would be appreciated.

 

[Mercy]

Dear KP,
I'm sorry you have been having so much trouble. You must be tired from all the blood loss. Please, drink plenty of fluids and take some iron if your doctor agrees. A pelvic ultrasound is a good idea. It is not painful and should show the doctors what is needed to be done. Pre-op, as far as I am aware, (someone correct me if I am wrong )usually consists of blood draws and a chest x-ray. Not too scary as medical stuff goes unless you really don't like needles.

The waiting and the unknowing can cause anxiety all by itself. Try to look past this near present to the time when you will be free of this bleeding and pain. Life is much more joyful when menopause just ends like this with surgery. Just think, you can go on long walks, or to the Pub with no worries. Freedom is wonderful, as in full of wonders, we don't have to see them through our pain, mess and fear.

I had a similar problem as yours but from a different origin. I remember heavy unpredictable bleeding.(I wore adult diapers if I felt the least bit crampy). I was passing large clots. The pain was terrible.

For me, the diagnosis was severe endometriosis. The Doctor thought it was caused by the large amount of endometrial tissue forced out my fallopian tubes during years of abuse. My surgeon said that everything was stuck together by areas of tissue. She tried to separate as much of the small intestine and scrape off the inner pelvic lining which had large colonies of endometrial tissue.

I had a total hysterectomy including the cervics but leaving half of each ovary. I was 26. Except for the mourning over never being able to carry my own children, I was OK. We adopted two girls and I got to be a Mummy too.

I will be praying for you. I don't know where you are faith wise but there is a psalm that applies and it goes something like this. '

They that wait upon the Lord shall renew their strength. They shall rise up on wings as eagles. They shall run and not be weary. They shall walk and not faint. Teach me Lord to wait.'

There are ecological facts behind these images. At the time these psalms were written, eagles migrated from Turkey to the Sinai down the rift valley. They had to wait for the earth to heat up enough to give them strong updrafts. Then when the time was right they took off forming columns of eagles riding the thermals. When the air at the top cooled, the far sighted eagle simply drifted down to the bottom of the next column of eagles. They migrated this way for thousands of years, hardly ever needing to even flap their wings. Teach us Lord to wait, secure in your provision for us, that all things will be at the right time.

 

[desiderata310]

I have been through this before. I had terrible fibroids.
A pelvic ultasound is actually very triggering for me so I was grateful that the woman who did mine was so kind and gentle and explained what I would feel. I don't feel comfortable talking about that on board but if you would like to talk more about that procedure, pre-op and what it's like to get a hysterectomy I would be more than happy to PM with you.

 

[KP the nut]

@Mercy & @desiderata310 thank you both so much.

Mercy, I am so sorry this happened to you at such an early age and I am pleased you are now a mummy to 2 beautiful girls.

You are right, once this is over I will be able to get a life back without wondering if I will flood. We had car trouble on holiday and had to wait ages for the recovery truck. I knew I needed the bathroom but was stuck. A garda policeman who checked on us took me to a service station, I was so thankful I didn't leak in his patrol car.

desiderata, thank you for your reply as well. Yes, please PM me. It is helpful to know of others who have had this.

The bleeding has eased again. If I am still bleeding tomorrow, I will phone the gynae unit. I am cancelling my physio appt. tomorrow as well. I am due in work for an hours meeting. It will be a good time to discuss office cover for when I am away.

Missing Hubby tonight. He keeps phoning to check I am okay, bless him. I'll be glad when he is home tomorrow night.

 

[Suzetig]

I too have incredibly heavy bleeding, there are medications they can prescribe that do help - tranexamic acid worked to some extent. The thing that I find most helpful though is as soon as I feel cramping I take ibuprofen, just a generic store brand according to the instruction on the pack. Ibuprofen acts on prostaglandins which control bleeding as well as helping the pain of cramping etc.. I use a "fast acting" one which contains ibuprofen lysine, which has added benefits in bleeding control and reducing clotting. I keep taking it every 3/4 hours whether I feel pain or not, whether I'm clotting or not - by taking a continued dose it keeps the prostaglandins under control which does make things easier.

Usual caveat, of course, about taking medical advice from random Internet people.

 

[Chava]

Sorry you are going through this. I haven't had surgery, though I was a wimp and canceled mini laparoscopy because I've having pain intolerance problems and feared recovery...but am trying more hormone treatments. Since you've tried progesterone in larger doses and still experience such bad bleeding, I think it's excellent you are going in to get more help.

Ultrasound was not fun, but not painful, and I appreciated the nurse holding my hand so I could focus on sensation in my hand...and the doctor explaining what they found up on the screen, so I could see what she was seeing and have someone interpret what it meant so I could sort of understand...so I wasn't like a passive participant in this process. Laparoscopy could have seen more, and it's still an option (assumed endometriosis, possibly fibroids...obvious hormone imbalance and too much estrogen based on what they could see on uterine ultrasound). I'm still at the level of trying hormones...and third version of progesterone seems to be better. I also don't have a spouse or support person for surgery recovery, so don't want to do it until i'm out of options...but I'm willing to next year if things don't improve or if they get worse. I can relate to your anxiety but also think it's awesome you have stuff set up and scheduled and I admire you for taking those steps.

I agree with others, focus on life after getting that fibroid or other miscellaneous tissues out of there. Pre-op stuff and anesthesia will help you go through it safely and without pain during the procedure. And hopefully life is better afterwards. Keep us posted. Sorry I don't have much to offer regarding surgery, but glad others do. And glad you posted because this stuff creates a lot of anxiety for me and I feel alone with it. I'm young but should probably just have some parts removed because my hormone imbalance isn't recovering from my eating disordered past. I teach and have had to worry about making it through a one-hour class (with every super-duper sort of protection)...had a colleague available on back-up for worst days, but that constant worry that you'll just start bleeding all over is horrible...and exhausting. For pain I also have to take Tramadol + Tylenol + Advil (my poor liver...).

Good luck!!! Do lots of lovely, comforting things for yourself right now and in coming days.

 

[BloomInWinter]

I have the fibroids and the clotting, but as of yet not bad enough for surgical intervention. I don't have any wisdom other than to say I'm so sorry you are having to deal with this.

 

[desiderata310]

I'll write when I get home and on my computer. Phone is a terrible way to try to post

 

[KP the nut]

tranexamic acid

Been taking that for years. It helped initially, but is of no effect now.

Ultrasound was not fun

My Hubby laughed at the instructions for this because he knows I don't do a full bladder well:eek::oops:. Definitely a day for the 'tena' lady:facepalm::rolleyes:.

Thankfully my sense of humour is mostly intact. One of those situations if I don't laugh, I'd cry. Thank you all for your support, it is much needed.

 

[Chava]

Oh, I didn't know about the bladder thing! I was fine, but better to be prepared (and yes, keep a sense of humor if possible...life-saving). I had some bleeding afterwards but that was probably from the little biopsy they did...that sucked a little more than the ultrasound, but if there's a chance you get to view the ultrasound too, it's pretty cool. I think I hate not understanding what is happening in there just as much as I hate the pain. So ultrasounds = power (or laparoscopy or surgery if that's the next best step).

 

[nursenurse]

Hi KP,

Well, I went through the whole shooting match for years! soaked through every pad and tampon known to man, had myself padded from my chin to the back of my neck. Ate ibuprofen by the bottle when period time came. for years. On top of that, I was doing medical mission work in countries where you do not flush sanitary supplies. and changing 3-4 times an hour during the first two or three days. I think I should be honorary salaried CEO of Tampax and Always. You know those commercials that said "Have a Happy Period? I was ready to heave a rock at the TV.

So, the options were:

1. Hormone therapy. Not the best for long term intervention for an over 50 something.

2. D and C - at the minimum. for what? To tell me what I already knew.

3. Endometrial ablation/myomectomy - to destroy the lining of the uterus, and remove the fibroid.

4. Hysterectomy.

5. Wait until menopause, when the thing will likely shrink on its own and EVENTUALLY, likely, never bother me again. As long as i didn't become a homicidal maniac while waiting.

I can't tell you what to do, only what I dead. I told my GP that i had a gyne problem and wanted a gyne referral. I don't think I even told him what the problem was. Saw the gyne, had my tests which confirmed the fibroids and an endometrial polyp. He outlined the above options. Number 1 and 2 were dismissed. I told him he had one chance, and one chance only at getting me in the stirrups in the OR. I don't have time to play around, i have had friends who have had the ablation and myomectomies return a few years later for the hysterectomy. So, I ripped the whole works out. I could not have it laparoscopically because the fibroids were too big, so I had the bikini cut, abdominal hysterectomy. Still can't wear one of those damn things. I have never looked back. He removed the ovaries as well, they tend to do that in over 50s having a hyster as you remove the potential for ovarian cancer. Cervix gone as well.

I spent 2 days in hospital, first night I had the happy button and kept myself pain free with morphine. I was switched to oral meds the next day. Had a catheter which was removed as soon as I could no longer play with the button. discharged the next afternoon, on Percocets.

By the second or third week I was walking 5 kilometers, it is so important to walk even when you don't feel like it.

My daughter took me home when I was discharged, and we stopped at the pharmacy to pick up my drugs. You have to pass through the feminine product aisle to get there. I was walking a little slowly, until I realized where I was, then I did the happy dance, to my daughter's embarrassment, singing "No more pads! No more pads!" hands in the air, hips with a little sway. As I was waiting for my script to be filled, another customer came up behind me and said, "I am so jealous".

I have never looked back. I am currently on Estrogel because otherwise I would have been thrown into menopause. I apply that to my arms daily. I use a half dose, and I don't have any flashes. Come to think of it, I don't get any flashers, either.... I am going to continue with it until all my friends have gone through menopause. Then I will be the youngest looking one of the bunch.

Aside from a slight weight gain, I have had no bladder problems or any other complications.

Not everyone would have as easy a time as I did. I couldn't stand it anymore, it was getting in the way of life. I travel for work, I travel when I don't work. Toilet stalls looked like murder scenes in the countries where I had to get "things" into the garbage cans.

Only you can make the decision for what is best for you, along with the recommendations from your doctor. I am a happy, pad free camper. I never realized how yucky I was feeling until awhile after the surgery. No more loss of energy, no more loss of blood, and I wasn't trying to rot the lining of my stomach on a monthly basis. My energy levels perked right up.

So. What you have is not life threatening, but it runs your life. Don't be afraid to fix it. Just get all the info you can and make the best decision for you.

 

[Deleted member 6617]

Sorry, no helpful words or experience to share, but prayers and positive thoughts. Keep that sense of humor and it will help you through! :hug: