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Mirena IUD or removal of the Uterus
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Mirena IUD or removal of the Uterus

Hi,

I know that I'm probaly on the wrong site, but I desperately need advice and was wondering if anyone here has had a Mirena IUD to help Endo or other kind of pelvic pain, or problems with the Uterus.

I have had ongoing problems which I assumed were either Cysts or problems with my Endo. I went to the Gyno on Thursday and it was another ongoing battle. He thinks that everything is fine since i had my last lot of Endo removed yet I seem to have all these horrible ongoing problems and pain. He suggested a Mirena IUD, to hlep control heavy bleeding and pain. I don't like the sound of the symptoms of bleeding for 2 or 3 months. I asked about removal of the Uterus, which I'm considering. He made me feel like a Drama Queen and also said that it would help if I lost weight. Which made me feel even more upset. The day I went in there my tummy was so swollen that I could not actually see my feet. I have tried other contraception for Endo over the years and nothing works.

Anyway I was just wondering if any ladies here who have had problems and had to have the Uterus removed, has this helped pain and bleeding. The bleeding and pain is so bad that I can't actually leave the house.

I hope that everyone is well or heading towards the recovery side.

Thanks

Kate

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15 Comments
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Kate,

Yesterday morning I was standing at my bathroom sink and my tummy was literally sitting on the counter and of course all I could do was laugh. When I told my kidney doctor that something was wrong, gaining weight, nauseas and pain all my doctor said is "well you are over 40". If this were a mans problem and these doctors had disabling pain, bleeding like a stuck pig & couldn't see their penis's than they damn sure would find a cure. Good luck in your decision. Have you gotten a 2nd opinion?
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I have polycystic kidney disease and was dx right before my 30th birthday, what a present (I'm 42 now). My kidney doctor is a specialist (nephrologist) and I have seen him since my dx but after my last visit I decided that he was not the doctor for me. So I'm looking for a new kidney doctor & an obgyn/oncol. My weight gain started over a year ago (time flys when having fun) I'm now 45lbs heavier than I was (I don't know kgs or kilos-are you in the UK). I don't eat alot and am pretty active especially since my dh hurt himself 1/29, I've had to do everything around the house include take care of him so needless to say I don't have alot of time to rest. Did they have to do laproscopic surgery to dx your endo, my 1st doctor  said I might have it.  I haven't had the deprovera shots but from what i've read I don't like the sound of the side effects, why did they give you so many shots? Hopefully when I find a doctor he/she will listen. I have already tried a 2nd doctor and he was only interested in giving me an ablation and he didn't even look at the copy of my sono before saying the cysts were nothing. He whipped the Novasure brochure out so quickly that I thought it was stuffed up his sleeve, I think that he just wants to be widely known for that type of procedure. He gave me a 1 minute exam before saying I was a good candidate for it. I ran out of that office and never went back. I'm thinking about going to the Cleveland Clinic here in South Florida. That way I can get a nephrologist and a gyn specialist at the same place. I would love to find a nephrologist that would drain all of the cysts on my kidneys, supposedly that may help with the kidney pain I have 24/7. And a gyn that will listen, my 1st one was the one who did the tv sonogram and I'm not sure he new what he was doing. All he told me was that I had a 30x35 cyst on right ovary and 10x16 on left and at the 3rd sono he couldn't find the left ovary. He never told me anthing else and thats scary because everything I've read from all these lovely ladies they have a name/description of the cysts. The only thing he said was I needed surgery to remove rt ovary/tube and not to put it off than he said he couldn't do surgery because I was high risk (don't know if it was due to kidneys or high bp). Anyways I wouldn't have let him do it I don't trust him enough. I'm rambling again, sorry.  I have a habit of doing that...:)
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Hi,

Don't apologise you are not rambling, we are all going through a hard, frustrating and painful time. Polycystic Kidneys sounds very painful, and ovarian cysts on top of that sounds even worse. I hope that you find a Doctor that listens. I don't understand how some Doctors think that they can just make a diagnosis within a minute and especially without looking at your previous test results, its shocking. I hope that you find decent specialists in at the clinic in Florida. How long ago were you diagnosed with those cysts on your ovary? When are you going to the clinic?
From my experience keep away from Deprovera, it caused problems for me. I have had 2 laps for Endo. Why is it so hard to find a good specialist these days? And why are they always Men? I never seem to come across female Gyno's.
Please try to get to the Clinic soon, especially for those Ovarian Cysts, can you feel them?
Take care
Kate
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I've been dealing with the pain from my kidneys for so long & taking pain meds for so long that that's all I know. I couldn't imagine a life without it although I do dream. I always thought it was strange that my kidney doctor didn't want to drain the cysts to see if that aleviated the pain and everytime I would ask he would say that I would lose function well I would think that the pain medication I've taken for 12 years would do more damage. But what do I know. I was first dx with the ovarian cysts 8/17/05 and over the next two months I think I had 3 more ultrasounds than at the end of October Hurricane Wilma hit & disrupted everything in S. Florida for a month. My 1st doctor said he wouldn't do the surgery (high risk & all) 2nd doctor was just out there and than for 3 months I tried to get my kidney doc to refer someone in the area and he never even had the decency to return any of my calls or faxes. Somedays I get really scared that its gone to long but nothing I could do about that since I have had to take care of my dh, no one else around to do it. Than other days I know that it will be ok.
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In my opinion, all the Mirena coils can be packaged as biohazards and dumped into a landfill.  Yes, for some time, you might have some relief from your symptoms.  Then, anytime from 1 and a half to two years after insertion - if you are like many women - you will then proceed to suffer from even worse symptoms than you currently have.  Do you have the option of seeing another doctor?  Has your doctor have you try other prescription options such as Prometrium (a bio-identical progesterone)?
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I had a D&C with a mirena inserted because of period problems and my doc said that because of the D&C that I wouldn't have the bleeding for 2 to 3 months. It's only been 2 weeks but so far so good. You should look up about the mirena because it's not for everyone.
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Thanks Suzsen,

Its good to hear that you are feeling better, it must be life changing for you. I have not felt well for 15 years. How long did you have Adenmyosis for before you decided to remove your Uterus? And what pain control methods did you try until you decided on surgery?  When I saw my Gyno last year he said that he suspected I could have Adenmyosis. I asked him if he still supsects Adenmyosis on Thursday and he said no (blames it on my weight gain). I get told so many different things, and dream of a pain free life that doesn't envolve around Endo.
Thank you for sharing your story.
Kate
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Hi Mickey Vicki,

Thank you for your opinion its much appreciated. I take it that you know of Ladies whom have had problems with the Mirena? I have been reading a little about it in my new Endo book, but I'm not 100% sure and don't have a good feeling about it. I have to have a pap test first (as I have been having spot bleeding after sex, don't even attempt that department now, hope I'm not sounding to personal). To be totally honest I'm so sick of it all I would rather aim for the chance of having a pain free life and opting for removal of the Uterus, which he said would be a last resort. I no it problay sounds crazy to some ladies. Do you know of anyone with Endo whom has chosen this option? Are Prometrium perscriptons used to control Prostaglandins?
Thanks
Kate
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Hi,

Do you have Endo? What kind of period problems were you having? Were you having pain with heavy bleeding? Sorry 101 and questions. Did the D&C help? Did it hurt to have the Mirena put it? I'm glad that the Mirena is working for you. Did you have bloating and did it help with that?
Thanks
Kate
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Removing my uterus was the best thing I ever did.  The recovery was much shorter than my 2 c-sections.  My PMS symptoms decreased DRASTICALLY, and I'm not exhausted and anemic any more.  If you don't want any more kids, I highly recommend it.

I had my uterus removed due to adenomyosis and fibroids.  Adenomyosis is like endo except the endometrial tissue is still inside the uterus, but it has worked its way into the actual muscle tissue of the uterine wall, so the whole organ is acutually hemmoraging with every period.  I was in severe pain, bleeding heavily, and I had an irregular but short cycle so I had all this fun every 3 weeks instead of every 4th week.

I read somewhere there's a theory that adenomyosis can start when endometrial tissue gets into the incision in the uterus during a c-section.  That would make sense for me since I had 2 c-sections.  I've also heard of endometriosis growing on c-section scars.
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Hi Nikki,

I have had Endo for the past 15 years but things have been worse for the past 2 years. I no what you mean about having this tummy problem. My tummy problem started 1 1/2 years ago and didn't match the rest of my body, the bloating and stretching was so severe it caused bad stretch marks across lower tummy. I was only 58 kgs at the time. I thought that the weight gain was becuase of Endo but the Gyno said on Thursday it was due to Depro-Vera shots. I had been given to Depo shots in the space of 3-4 weeks as opposed to the usual 1 shot, and then at the same time I was put on Nordette becuase to stop the bleeding and nausea from the Depo. I gained 30 kilos in a few months mainly around the stomach. I generally have pain everyday and 2 weeks ago I went to the Doctor who told me she thought that it was an Ovary problem not a stomach problem. I have been sent to all types of specialists and told all kinds of ridiculous stories. I hope that your doctor starts listening to you and that you feel better, its so frustrating. I can't beleive that the doctor mentioned to you that it was caused by being over 40, thats plain lazy (the doctor I mean), its as lazy as my Gyno sitting back in his chair asking me whats happened to your weight etc...grrr grrr, I couldn't even see my feet. How come you are seeing a Kidney Doctor?
Take care
Kate
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hi kate, I have never been told that I have endo. I would have a period every 2 weeks and some periods would last for 3 weeks. I had heavy bleeding and pain with every one. The mirena was my first option before ablation then hysto, so I took it. I don't think that the mirena will help you with any pain though, just maybe help control any bleeding trouble you are having.
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I was preparing to have Uterine Artery Embolization when the specialist sent me for an MRI, he suspected UAE wouldn't fix my problem. The MRI found 3 1.5 cm fibroids and said my uterus was enlarged diffusely, which was indicative of adno.  UAE would fix a fibroid, but not endo.  I found a few books with names like "Keep Your Uterus," they said the only solution for adno was birth control pills or a hysterectomy.

I had been on bc pills and Aleve to reduce the bleeding and pain.  But my gyn said I had to come off the bc pills since I was nearing 40 and had a family history of stroke.  The Aleve did help, you have to take 2 right when your period starts, then one every 8 hours for the next 3 days.  Or you can get the prescription strength of Aleve, which is Anaprox.  But both meds can cause stomach upset, and eventually they became less effective. My 14 year old daughter is now taking Aleve for cramps and says it helps her.

I don't know exactly how long I had adno.  When my son was born by c-section in 1989, the doctor saw fibriods and actually removed one because it was in his line to close.  3 years later at my daughter's c-section the dr saw more fibroids, but didn't want to remove them becuase of the risk of bleeding, uterine defects, etc.

Hope this helps.
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I only know one woman whose doctor recommended the Mirena for endo, but I know about 10 women who had the device for birth control purposes.  ALL of them developed problems which mimicked endometriosis or ovarian cancer -  abdominal pain, abdominal bloating, "irritable bowel" type problems,  missed periods later followed by 'flooding' and/or  nearly constant spotting.  

I myself take Prometrium for endometriosis.  It is true that a couple of years ago I developed an endometrioma while on the medication, but the medication does help balance the excess estrogen and regulate my monthly cycles.
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I just had mirena put in on July 9th 2 weeks ago and had a D&C at the same time, to help with Endo. and since then I have had spotting to light bleeding, as well as really bad sharp contracting pains. I went to ER where my doctor came to see and gave me antibiotics  and really strong pain killers. the pain killers do help with the pain but the antibotics don't seem to be doing anything I am planning on calling my doctor tomorrow and having the mirena taken out i am in worse pain now than I was before, although it did help with the bleeding so far cause the bleeding is not as heavy. anyone else know of anything else I can do cause B/C pills do not help me I have tried just about every pill and this was like a last resort ot having a hysto but I am 28 and have no kids please if anyone can help me, let me know
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