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Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy bleeding Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy bleeding

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  #1  
Unread 05-03-2010, 09:45 PM
Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy bleeding



Like most 'newbies' who are here, I am scared and unsure what road to take. I am 42, I have not been to any type of doctor since 1994 until just a couple of weeks ago. I have had 'female problems' since I was 15... endometriosis, ovarian cysts, etc... my TOM's are so heavy that I use a super plus tampon less than every 30 minutes and the pain is severe to the point of being bedridden during TOM as well as mid cycle and after sexual activity. I was just diagnosed with severe anemia (9.7), multiple fibroids (melon size), and a uterus that is larger than a basketball (above my belly button to so low that doc can feel my cervix during exam) and with my ovaries at my hips area. I go in tomorrow (Tues May 4th) for a biopsy to check for cancer. She wants to do a complete and radical hysterectomy, but I am unsure... I also have Multiple Sclerosis. I don't really know what my questions are, I guess I am just wondering if anyone else has been in a similar situation. Do I have so many problems that I must have a hysterectomy... is that the only way to go?
  #2  
Unread 05-04-2010, 05:18 PM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

Wow, what an eventful day... and a GREAT ONE at that! Ok, so last night, my husband and I were talking and I said "you know babe, I just have a feeling that I am not supposed to have the biopsy... but I don't know if it is God leading me or my own fears"... so I prayed about it all night and this morning. I came to a decision that once I got to the apt, IF the GYN had a negative report regarding the mammogram, than I would not have the biopsy but continue to explore other options and alternatives to deal with my problems rather than jumping right into a hysterectomy. The mam came back abnormal, they found a mass or something... so, I decided right then and there NOT to have the biopsy, I explained my position and she starting thinking 'outside the box' and helping me in a direction that was not so evasive. She decided that my problems were above her scope of expertise and that I needed to go see an endometriosis specialist for a MRI and maybe a CT scan, that way they can get a better look into what is going on within me without having to cut on me. The specialist can help me with other treatments more related to my exact case... medications and such. I think this is a huge victory for me. I know my body, and surgery and I do not mix... every time they do surgery, I end up with more problems than what they originally went in to fix. SO, I am happy about going to see a specialist and exploring other options! Anyway, she sent me downstairs to have a more detailed mammogram done... the mam specialist immediately looked at my results and WOOOOHOOOOOHOOOO, my boobies are a'OK!! No problem what so ever! There was just a shadow or an 'overlap' in the first photos but once they took a more detailed look, it came up to be nothing. I am happy, to say the least LOL ... so, now I wait for the office to call me with the apt date for the specialist.
  #3  
Unread 05-04-2010, 09:06 PM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

wow, Xen... thank you! However, your post is a bit over my head *blush* ... letrozole is a medicine? 'endo' is for endometriosis, correct? What is UFE, is that the thing through the vein in the leg? MS is connected to allergies? I was diagnosed back in 1993 and I have never heard that. I am not familiar with autoimmune disorder, I will have to google that LOL I have no clue what you are saying in the next sentence... is P450 a drug? Wow, your post is so full of information... I truly appreciate it!! Maybe I should just print it up and carry it to every doctor I go to. Please forgive my ignorance... I do not treat the MS with man made medicines, I just live a healthy lifestyle to the best of my ability with whole and fresh foods, portion control, water and as much exercise as I can do... I have also lost over 55 pound since 2007.
  #4  
Unread 05-05-2010, 09:24 AM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

(((GoldenHope))) Letrozole, also known under the brand name Femara, is an aromatase inhibitor - a medication which inhibits the conversion of testosterone to estrogen - which is FDA approved for use as adjuvant therapy in women with a history of breast cancer. There may be doctors who might be willing to try it for other conditions, possibly even endometriosis, but that would be an off-label use of the medication, so most doctors would probably be reluctant to prescribe it and insurers reluctant to cover it.

[Cytochrome P450s are a class of enzymes that encourage the interconversion of certain hormones; aromatase is one such enzyme. Since endometriosis is often related to estrogen dominance (estrogen levels out of proportion to other hormones), inhibiting the aromatase enzyme is one way that *may* help discourage endo from growing.]

I'm glad you are going to see an endometriosis specialist. I do have to caution, though, that endo is not going to show up in MRIs or CT scans, although if it's done a lot of damage, some of that damage might show up. The only way to see endo is surgery, whether it be laparascopic or open.

Rather than experimenting with medications which are not approved for the conditions you're experiencing, I'd suggest asking your doctors about trying estriol, which is a weak form of estrogen which is the primary form of estrogen in pregnant women. Pregnancy often suppresses the symptoms of MS (and endo, too); this has led researchers to look into it as therapy for patients with MS. Here's one discussion of the results:

http://autoimmunedisease.suite101.co...iple_sclerosis

And since estriol and estradiol compete for the same receptors, and estradiol stimulates endometriosis, estriol may also help with endometriosis. It would at least be worth a try, and estriol is viewed as a legitimate treatment for MS and might be more accessible to you than aromatase inhibitors like Letrozole.

I hope this helps.
s,
-Linda
  #5  
Unread 05-05-2010, 11:08 AM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

surferbabe ((Linda)), thank you! I now have much to research, and I appreciate you directing me in some avenues of knowledge!! I feel so dumb, I did not realize that MS was an Autoimmune disorder.


Here is my quick history:

* As a child I had multiple extreme allergies, to the point that radical changes in lifestyle had to be followed.

* 1982/83 - large ovarian cyst found, when they opened me up, they found tons more along the walls of my uterus and had to do exploratory surgery to remove them as well... that is also when they found the endometriosis for the first time.

* 1987/88 - laparascopic surgery for endometriosis as well as damage that was done from the first surgery, I had terrible scarring and my ovary had healed to the uterine wall. I was told the 'flap' of skin that is supposed to cover and protect my female organs was twisted and balled up into a corner, so they 'fixed' that.

* 1990/91 - 1st child - C Section

* 1991/92 - 2nd child - C Section

* 1993 - was diagnosed with Multiple Sclerosis

* 1994 - 3rd child - C Section - Because of my history of scarring, they had to cut away and clean up the scar tissue from my past two c sections. I also had my tubes tied, cut and burnt

* I did not see any type of doctor from 1994 until 2010. - Because of the MS, I had a 'pre existing' condition and I could not get insurance... did not qualify for state help and could not afford the higher rated (very expensive) pre existing condition insurance, so I had none.

* April 13th, 2010 - First doctors visit with the GYN: Severe anemia (9.7), Endometriosis, Fibroids, Prolapse of the uterus, Chronic pelvic pain & Heavy bleeding


So, that is where I am now... it is odd that so many of my problems fall under autoimmune disorders, all of my family (Mom & Siblings) have many of the same problems, including terrible thyroid issues.
  #6  
Unread 05-06-2010, 01:39 PM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

The specialist has the MRI ordered for Wed the 12th, he will view results immediately and then I will go in to see him for the first time. I will be asking him about estriol, thank you again Linda, so very much!!

EDIT: OMGoodness, I am SO HAPPY... GYN office just called me back, they just got off the phone with my insurance and YES the MRI is covered and NO they do not have any 'pre existing condition' clauses!!!! I am so thankful that not only am I being taken care of, but that it is not an added financial burden on my husband!!! P/S: with today's insurance companies, this is nothing short of a miracle IMO!!!
  #7  
Unread 05-06-2010, 01:46 PM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

Good luck! We'll look forward to hearing how it goes.

s,
-Linda
  #8  
Unread 05-07-2010, 10:58 PM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

I have so much information swimming in my head... this post may be sporadic

My current GYN gave me THREE choices... Lupron, hysterectomy and UAE (also known as UFE), after days of research, NONE of these are an option at all for me. As a matter of fact, BECAUSE those were the ONLY things that woman would talk with me about (she would not discuss alternative treatments and just kept saying things like "well, if you are not going to treat your problems at all (because I opted against surgery), why even bother getting tests done or being seen") I have decided NOT to go back to her and find a new GYN.

I look forward to the MRI on Wed... I will find out from the specialist the size of the fibroids and my uterus as well as what stage the endometriosis is in, I will discuss with him at that time alternative treatments for my problems. Realizing that I may not 'cure' them, but my goal is natural and homeopathic 'healing' and symptom control as much as possible.

I am very happy (relieved) about something... in 2007 when I started my weight loss, I have worked fervently on decreasing the size of my lower tummy... weight loss, cardio, sit ups, etc have not helped at all, I still look like I am 3 months pregnant. Well, I can now lay to rest the nagging thoughts in my mind that I have not 'done enough' to flatten my tummy... the problems within me are the reason for it.

I have found a couple of organizations that I am looking further into... the HERS Foundation and the Lupron Victims Hub and my HATRED for the FDA has increased 3 fold.

I have always been one to be very active when it comes to my health, when I was first diagnosed with MS, I went to work researching, when I started living a healthy lifestyle, I went to work researching and now that I have knowledge of my female problems, I am at work researching. Nobody is responsible for my health but me and NOBODY is going to tell me what to do with my body without me first looking into whether it is good for me or not. How dare that GYN.

My next step is to start researching homeopathic and natural remedies... don't know what I'll find, but I wont stop until I have answers.

Thanks for letting me vent girls... I am angry, I am discussed at the information I learned thus far and sad due to the pain and suffering so many women go through.
  #9  
Unread 05-08-2010, 10:27 AM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee

yea, homeopathic... no. LOL I'll just continue on with natural remedies!
  #10  
Unread 05-08-2010, 06:55 PM
Re: Fibroids, Endometriosis, Prolapse of the uterus, Chronic pelvic pain & Heavy blee



To help you find the right doctor for you, you might want to check www.suggestadoctor.com. You could also search for a naturopathic physician who could help you explore alternative treatment therapies.

I am interested in how your doctor is going to be able to stage your endometriosis. Did you have a recent laparoscopy that is not in your recent medical history? Without one,not only is a a definitive diagnosis is unlikely (though with your past diagnosis quite probable), there is no way to know what the stage could be. For one, there is no correlation between pain/symptoms and the stage of endometriosis. Someone with stage IV could have no symptoms at all while someone with stage I might have multiple symptoms. Or the opposite scenario could be true. Endometriosis rarely shows up on any type of test and since it is outside the uterus, it is not going to be found during a biopsy from inside the uterus.

I do want caution you about some of the information you are finding. Both sites you mentioned above are biased toward their opinion but do serve a purpose for reminding people that there are side effects to consider. Just remember, almost any information can be presented to support a chosen hypothesis, thus it is important to verify information using reputable sources.

I am not pro or anti hysterectomy. I do tend to post more about the negative side of the surgery since my experience was not a happily ever after one. Additionally, my primary focus is endometriosis for which a hysterectomy is not a cure. Based on my experience, I strongly encourage women to seek second opinions and alternative treatment options since a hysterectomy is not a first line treatment option or cure for many gynecological conditions. However, I am fully aware that most women will find the surgery success without experiencing major complications.

Additionally, I am neither for or against Lupron. It is an option for several gynecological conditions, it is less invasive than a hysterectomy, and it is has helped many individuals. However, I am aware that for some the side effects are worse than for others, just as with just about anything from surgery to medication to lifestyles. Lupron was suggested to me my GYN a few times but because of other issues my neurologist always nixed that choice.

With just about anything, positive experiences are not the ones garnering attention, namely because those with a positive experience are usually back to their normal lives and don't feel a need to spend time writing about their experience. This is true of hysterectomies, Lupron, the soap people use, and the cars people drive. Human nature is such that we often fail to share the good and thrive on the bad.

I commend you for being active regarding your health and research. We have an extensive Resource Database where you will find reputable information that you might also find helpful!

I hope you will keep us posted about your journey!

S
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