What else can go wrong?

[Tiff]

Hi all,

Just got back from my PCM, and after a pelvic ultrasound, I now know the reason for my monthly cramps and severe bleeding… fibroids.  :doh:  No real surprise.  My mother had a complete hysterectomy at 36 for endometreosis.  This is different, but the treatment options are pretty much the same.  I need to decide what to do, if anything.

Does anyone here know anything about these treatments?  I am going to research, but I do want opinions and experiences from here if anyone has any because this is one thing to deal with if it were the ONLY thing.  If it were my only problem, I would probably just have the ablation done and take my chances.  But I really am concerned about the same problems coming back and needing it done again and again.  Plus, with a cancer history I really don't want to walk around with tumors even if they are “always” benign.  Call me paranoid.

This is really just over the top for me right now.  Thoughts are welcome.

[Trudi]

[user=45]Tiff[/user] wrote:

This is really just over the top for me right now.  Thoughts are welcome.

Hi Tiff–

Can't give you any advice since I'm not knowledgeable about this; however, I feel for your frustration, recognize that this is just too much, and will keep you in my prayers.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[linda]

I had a hysterectomy at age 37 for endometriosis, and part of my decision was the fact that I had more than one chronic illness to deal with. Since mine was for endometriosis I had no choice as far as keeping my ovaries, but you do. However, with your family history of cancer, you have to consider the option of having your ovaries removed. When you have a hysterectomy you run the risk of not knowing you have ovarian cancer until it is advanced because you will be asymptomatic; there won't be any cycles that become irregular, etc.

You also need to be sure you don't want any more children. Obviously that's not a medical decision but a personal one. It is a very difficult decision and I don't envy you. I was to the point where I couldn't ride in a car for more than 15 min, it was just too painful, and I had been thru all of the treatments and had 2 laparoscopies. Other than having to take hormones daily, my life didn't change in any other way. Everything was the same, if you know what I mean. 😉

Good luck with your decision, and keep us posted.

[Maz]

[user=45]Tiff[/user] wrote:

Does anyone here know anything about these treatments?  I am going to research, but I do want opinions and experiences from here if anyone has any because this is one thing to deal with if it were the ONLY thing.  If it were my only problem, I would probably just have the ablation done and take my chances.  But I really am concerned about the same problems coming back and needing it done again and again. 

Tiff,  a friend of mine had always suffered from uterine fibroids until she went through menopause and then they shrank and are gradually going away. Apparently, this is common, as hormones feed the fibroids.

If you're near menopause now, you might want to consider waiting it out, but if you're a good few years off menopause, quality of life will probably come into the equation. Of course, even if just removing the uterus (and leaving ovaries), hormones will be depleted and this may affect your RA, just as hormone therapy might using gonadotrophin-releasing hormone agonists to block your hormones. I think I might try hormone therapy before going for the big gun hystie first, just to see how my RA responded to depleted hormones. I think I'd also consider ablation before a hystie. I guess I'm just a least-invasive kind of girl.

http://www.nichd.nih.gov/publications/pubs/fibroids/sub1.cfm

All the best in your decision-making process with this. I think that's it now, Tiff…you've had your fair share of stuff…no more for you, okay? 😉

Peace, Maz

[maz.aust]

Hi Tiff,

Don't know your history and I am certainly not an expert in this field & more importantly don't know if you have any children or if this is coming into the equation … but, there may be another option, have you tried an IUD ???  You can ask your Gyno if this is an option, if not it seems you don't have a choice  The actual procedure for an ablation is easy you are in and out in a couple of hrs !!

Fibroids are a normal part of getting older and yes the hormones feed them, it just depends on your age & future problems as to what a gyno would do over here.  (ie hyster or no hyster)

For other reasons I had to schedule a hyster myself this year and being post menopause was surprised he left my left ovary, when I asked him why, he said because it was fine & healthy!!  Ovaries produce more than the obvious hormones and he said if at all possible he leaves one in. 

I know it was a big decision for me so I know how difficult it can be …  Just remember, if there is any chance of things turning into a complex problem (ie cancer)  you are far better off without the worry! 

Good luck,
Maz – Aust
 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Parisa]

Tiff,

I have a problem with fibroids too.  There is some thought out there that the enzyme formula Neprinol can help remove the fibroids.  You have to take a large amount though (can't remember off the top of my head).  I did Neprinol and vitex for several months a couple of years ago.  A repeat ultrasound did show an actual reduction in the size of the fibroids.  I got lazy about taking the Neprinol (and it gets expensive) so I think they have grown back as I'm  having symptoms again.  I'm thinking menopause can't come soon enough for me. 

[Tiff]

Thank you all for the input.  It really helps to hear different experiences.  Maz, thanks for the link.  This is good to read:

Uterine fibroids are not cancerous. Fibroids are not associated with cancer; they rarely develop into cancer (in less than 0.1 percent of cases). Having fibroids does not increase your risk for uterine cancer (Levy et al 2000).

So that in itself makes me feel a lot better.  I knew it in general, but it is still nice to read so specifically.

Maz, I also like the idea of being the least invasive, but I have to admit, the philosophy has not gotten me very far in my own experience with anything else.  I can't understand it.  At this point I am ready to take a sledge hammer to my problems.  But I will consider things carefully.  I have always had a tipped uterus and it has long been enlarged, and I am definitely not looking to have any more kids :P, so it is really just a matter of deciding what fits in best with the other issues I am dealing with right now.

I'll let you all know how the doc visit tomorrow goes.  Perhaps he will have some pearl of wisdom that will help me decide.  Thanks again!

[m.]

You might want to look at John Lee's books and/or web site and see what he had to say about fibroids.

[Tiff]

Maz-Aust,

I meant to ask if you had the hyst done traditionally or vaginally?  How was it and the recovery?  Sure dread the idea of having surgery misery AND RA pain!  Ugh!

Parisa,

I will check out the supplement idea.  There are a lot of of natural remedies out there that look interesting.  I would be far more attracted to this approach if I did not have RA, too, or if my RA was very controlled already.  This condition seems ideal for trying some different approaches, and there seems to be a number of interesting ones to try.

There is some info about a new procedure using an MRI and untrasound waves that is very non-invasive.  I am going to ask about, too.

[maz.aust]

Hi Tiff,

I had the surgery vaginally !!  The recovery is 5-6 wks – but that doesn't mean you are house bound or anything, just need to be able to rest when you want to so for me going back to work was a no no (went back at 5 wks), I was a bit sore for about 2 weeks (coughing was not nice…lol) but the actual recovery was relatively quick, I actually had a shower when I got back from theatre before I hopped into bed (much to the dismay of my gyneo as it was only 20min after waking up…lol) but I can tell you I felt fine — if it wasn't for me needing a transfusion 2 days later I would have been home in 3 days.  I had an indepth with my PR GP before surgery and she explained that I had some credit up (because of the length of time I had been on AP) and it was usual to come off the abx a week before surgery and start back a week after surgery .. she said most of her patients had a better recovery rate than normal people because they were on AP.

My advice, research the problem and ask your specialist lots of questions, I put the operation off for 4 mths — ie I knew in Jan it was probably the track I needed to take and had the op in May…

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Tiff]

Thanks, Maz!  That is good to know.  I have decided to try adding the BC pill for now, only because it has promise for helping my skin as well as making my monthly cycle more managable, so that makes it kind of doing double duty.  I will give it a few months while I deal with some other things and do some more research.  I think my symptoms are mild enough right now that this will be enough for the moment.  I would much prefer a more permanent solution, but I need a bit more time.  Thanks for the info!!

[maz.aust]

[user=45]Tiff[/user] wrote:

Thanks, Maz!  That is good to know.  I have decided to try adding the BC pill for now, only because it has promise for helping my skin as well as making my monthly cycle more managable, so that makes it kind of doing double duty.  I will give it a few months while I deal with some other things and do some more research.  I think my symptoms are mild enough right now that this will be enough for the moment.  I would much prefer a more permanent solution, but I need a bit more time.  Thanks for the info!!

Welcome Tiff ,,

You do have time — it isn't urgent!

I used a med called 'Primulet' to control the bleeding (very successful, no bleeding using that stuff) it's a synthetic progesterone.

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

Posts