Please send me Healing thoughts!

I want my Mummy!!!

I am sitting here in tears, I feel so awful! I had a horrible night, the bleeding is so bad. I am at the end of my tolerance and coping skills. I just want to crawl into a dark corner and not wake up again!

I know there are many of you out there with worse health problems than mine and I know I should cope with it and get on with it but I have reached a stumbling block.

No one seems to know what to do for me. My Doctors and Gyno ask ME!!!!! to go do research on what I can take and get back to them. Well I did that and here I am getting worse and still they do nothing!

I am in pain now, doubled over, clotting and constant heavy flow. I can't walk out of my house anymore without turning back because I have to fix myself up. I can't sleep through the night without having to wake up with the mess and pain every hour or less.

I know I am complaining, I am sorry to do that. I used to be able to talk to my Mum when ever some thing was wrong or upset me. But she is gone! I am crying my eyes out as I type this. Pete does his best but it's hard for him to understand and I am so moody and have taken to flying off into violent rages. I have no energy. I just want this to stop. I am so depressed.

I have to deal with the fact I can't have kids..... okay! there are many woman in the world that desperately want them and can't. I will have my cats. The Gyno said I should think about having a hysterectomy........I don't want to do that, I am 36yrs old for heavens sake! I don't want to go down that path, surely there must be an alternative.

I have had a D & C and it came back worse. I have tried natural remedies with no to little improvement. I am allergic to a lot of drugs and anaesthetics as I am a porphyric.

Sorry everyone, I just needed to vent. Tomorrow will be a better day!

Thanks and hugs.

Leslie how old are you? Is it possible if you are in your 30's or 40's that your mother might have taken a pill given out in the late 50's diastybestrol? you are posting about the same type of symptoms I had until they finally figured out that this pill was causing problems in female offsprings. You might ask your doctors if this could possibly be DES exposure?

Hi Hissy

I was born in 1965. I am 36yrs old. It's hard to say if mum took anything because she died in February so I can't ask her. She was born in 1944 so I don't think she would have taken that but who knows.

No, I understand about you losing your mother, and I am sorry for your pain. But if you mention DES to your doctors, perhaps they might consider this a possibility? Although I know it was a popular drug here in the States, I do not know if they issued it abroad. It was just a suggestion. I know what you are going through, and you have my heart, it is not an easy thing to deal with.

Leslie,

I don't know what to say but that you're in my thoughts!
CHristy

I know I don't post much in the lounge, but I wanted to let you know that what you are going through IS something to complain about. I have a close friend who just went through the same thing. It was horrible to watch her in so much pain and to feel so tired and weak all the time. I can't offer anything other than the option you have been given. They tried everything with her and it finally came to the hysterectomy. I just wanted to say that I hope you can get back to normal soon, and make sure to get extra iron in your diet now.

Leslie - you're in my prayers! With your mum gone (hugs), is there ANY way for you to find out about Hissy's question? I'm assuming she's asking because there was a solution!

I had problems in the past - it doesn't sound as bad as what you're experiencing - I could only not go out for a day or two, but it was what I considered bad. I went for acupuncture, and believe it or not, it worked. They've done clinical studies and so for "Western" doctors it has been "proven" that even though they don't know WHY it works, acupuncture does appear to work for menstrual problems and lower back pains.

That's all I can think of besides keeping you in my prayers and sending lots of hugs,

Laurie

Thanks Hissy, I have an appointment this afternoon at 4.30 I will ask him then. Is there any information on the net about it? As far as they are concerned it's early menopause.

Thanks Guys, I feel better just knowing you are there. Thank you! I am sure it will get better.

you poor thing! hope you get to feeling better soon!

Bundy, my friend, Jill, went through the very same thing several years ago and I really understand know how difficult your problem is. Jill was the same age as you are and her problems went on for a number of months. She had to work full-time and was always very weak and tired due to the heavy bleeding. Jill finally decided to have a hysterectomy, and for her, it really made a difference, she felt so much better afterward!

I think you should consider taking your Gyno's advice, but of course, that's up to you.

Lots and lots of positive healing thoughts and prayers are heading your way!

*HUGS*
I'm so sorry to hear that you're not well Leslie
I understand about the constant bleeding and how that drains you because I went through that for nearly a year when I had those stupid contraceptive needles. It's very frightening when it's so heavy and constant! I did not have the pain as well though, so I can only imagine how frustrated and upset you must feel
Being in constant pain tends to eat away at your patience after a while and eventually you get to the point where you feel you just can't take it anymore and lose it. This is normal so please don't feel bad about needing to vent or snap or be upset. Lee and I have both been existing on constantly taking pain killers for several months now whilst we wait for wisdom teeth surgery. Can only take so much pain though and need to vent every so often. It is ok...really!
Unfortunately I have no idea of what advice to give besides making sure you keep up your iron intake so you don't get run down. I hope the doctors can get this sorted out for you asap. It's their job after all to figure out how this should be treated not you!
Sending lots of healing thoughts and HUGE hugs your way!!
Louise *HUGS*

PS I found this book online...have you heard of it before?
http://members.tripod.com/~PorphBook/19.html

Also found a forum that looks very useful...
http://members.tripod.com/~theaipforum/

thanks again everyone, you are all so kind!

Thanks Louise, I do appreciate it. I have loked at these before but had another look, it's very hard to find anything that the treat woman with this problem that also have porphyria. I'll keep searching!

Is a hysterectomy really necessary, though? I remember a while ago, they had info about hysterectomies on NBC (I think it was NBC) and how they aren't always needed anymore.

Bundy, have they ruled out endometriosis? I've heard about some new treatments, with lasers. They lase the uterine lining, which gets rid of the thickening and cauterizes the blood vessels. You might look into that.

As for the hysterectomy, I was 32 when I had mine and I've never regretted it. In my case, it was an early-stage malignancy and, since my tubes were already tied, I opted to get rid of it, entirely. I do not miss those cramps and backaches one bit!

Check out all of your options but, if it comes down to it, don't refuse the hysterectomy. A pound of muscle tissue isn't worth living your life in pain for.

In the meantime, check pharmacies and medical suppliers. There are hospital-size pads on the market, designed for post-op and postpartum bleeding.

We're all behind you.

Leslie, I'm so sorry your are feeling like this.

Please be careful though, if the bleeding is this intense, make sure you do not become anemic (sp?). Eat as much iron fortified foods as you can. Losing this much blood explains your mood swings. You are literally draining yourself. I can't stand 2 days of heavy bleeding without becoming moody, crabby, weepy. I cannot even imagine going on for longer periods.

Also, I know the hysterectomy is a drastic choice to make. To make sure this is the right decision for you, is there any way you can get a second or even a third opinion? My neighbor (she is 29) had to have one 2 years ago. She has never felt better in her life and does not regret the choice they made. Plus....she never has to deal with the monthly problems we go through. How cool is that?

I also lost my mother 2 years ago.I understand how you feel. The next best thing to a mother is a roomful of friends to talk to. You came to the right room. Hope you feel better soon.

I'm sending healing thoughts to you and praying for a solution for your plight. Have you gone to another doctor yet? All the options I've read here are definatly something to check into! As long as you only have the uterous removed there is no need for hormone therapy. The pain and agony you endure must surely end soon. Please, let us know how you deciede to resolve this illness. (((((HUGS)))))

Leslie, There are so many good people here who would help you if they could. Take heart, have faith, and don't be afraid to mention some of these suggestions to the gynecologist. You must be very weak from the loss of blood. So, as was already mentioned, make sure you are getting enough iron. I wish we were wise and wonderful doctors who could heal you with a touch. However, we can pray for you. And you know I will. God loves all of us. We're here when you need us, and, hey, Bundy, you know where I live!

Leslie....I just now read this...i am so sorry you are in so much pain!!!! I will say prayers for you tonight!!!!! If you need to talk, please PM me...I have to go offline in a bit, but will try to be back tomorrow.

I hope you know that we all love you here and are here for you.

I don't know how much you are bleeding, but I went through a similar thing when I was going through my divorce...I bled constantly for 3 months or more....it was heavy...with clotting and much pain. My doctor said it was due to stress. Once my divorce was final and things settled down in my life...the pain stopped and so did the bleeding.

I will pray for you.......we are here for you!!!

Hi

Just wanted to say quickly this has meant so much. I feel so bad for complaining but I am so grateful I have you all beside me.

I climbed back into bed and tried to sleep. So many thoughts were going round in my head about what everyone here had said, about what my Mum would have said. I have a complete letter of complaint ready to be typed up to submit to the Doctor and the Gyno, explaining my dissatisfaction and anger over how this has been handled. I don't believe that they would like to promote self diagnosis and self prescribed medication yet with me they have put me in the TO HARD basket and told me to find a solution and what I can take! Well I did find out some information and I faxed it to the Gyno like I was asked to but that was the 28th October and I am still waiting! I wonder if it was a medical problem for one of them wether they would be happy being treated the same. It may not be very serious but I have no life. It is debilitating and exhausting and emotionally a killer.I think surly they should be doing more. I am going to confront my Doc with this plus a whole lot more questions and demand action. If there is none with-in 24hours I will be going else where!

I really believe your thoughts and love are helping me. I just needed that extra spark to keep me going and you all did that for me.

I will let you all know how it goes.

Heaps and heaps of love

Bundy love, I'm sorry I'm late in this thread, but I just wanted to say that I too will add you to my prayers and send you TONS of "get well soon" vibes (or should it be "Doctors do your job properly vibes"?!?!)

I agree that maybe you should try another Doctor or two, MAKE them help you, don't let them stuff you in the "too hard" pile!! You are Far to important for that!!

And what you are going through IS serious, don't think its not.. its affecting your WHOLE life - what could be less serious??

I don't have any advice for you, but I wish you all the help you need and hope with all my heart that this prob gets sorted for you soon.