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Please send me Healing thoughts!

post #1 of 41
Thread Starter 
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.
post #2 of 41
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?
post #3 of 41
Thread Starter 
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.
post #4 of 41
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.
post #5 of 41

I don't know what to say but that you're in my thoughts!
post #6 of 41
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.
post #7 of 41
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,


post #8 of 41
Thread Starter 
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.
post #9 of 41
you poor thing! hope you get to feeling better soon!
post #10 of 41
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!
post #11 of 41
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?

Also found a forum that looks very useful...
post #12 of 41
Thread Starter 
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!
post #13 of 41
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.
post #14 of 41
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.
post #15 of 41
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.
post #16 of 41
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)))))
post #17 of 41
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!
post #18 of 41
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!!!
post #19 of 41
Thread Starter 

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
post #20 of 41
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.
post #21 of 41
Oh Leslie, I do so, so feel for you. The pain, discomfort, worry and distress you are going through is almost too much to bear alone (well, almost alone).

I thought it was only our own NHS that treated patients so badly. Autrialian hospitals are always held up as a shining example here of how things should be. You need to be strong and INSIST the medics offer you all possible alternatives. However, you might have to face up to the fact that a hysterectomy is the only way to alleviate your symptoms.

I can fully sympathize about the childlessness. I had an ectopic pregnancy just over 2 years ago that nearly killed me and resulted in surgery that meant the chance of conception was slim-to-non-existent. What really borught home to me the distinction between us 'mere mortals' and others, was that the Duchess of Wessex (Prince Edward's wife) had the same problem about 6 months after me.

On the news they were going on about what counselling she was going to receive to help her come to terms with what happened etc etc etc. All I got was a scabby leaflet telling what stomach exercises to do to make sure I strengthened the stomach muscles sufficiently after surgery.

All this goes to say that you must jump into the driving seat and take control of what is happening to you. Don't take anything you're told for granted and research every possible option. Be sure the decision you take is the right one for you.

Lots of love and thoughts of support coming to you. Take care.
post #22 of 41
Thread Starter 
Hi Guys

I am overwhelmed at your support and kindness. Thank you from the bottom of my heart.

Well I went to the Doctor. I walked in, he asked me how I was and I looked at him and burst into tears. Well I guess although it was embarrassing it did get his attention. I told him how angry I was! I said I felt I had been put on the TO HARD shelf, and that I didn't feel either he or the Gyno was doing what was necessary to help me fix this problem. I also asked him if it was him bleeding heavily for nearly 5 months from his you know what and, he was told to do some research and get back to the doc etc and then wait nearly a month after doing that would he be happy with the way things were going. He said definitely not!!! Hoorah!

He was very supportive of my complaints and agreed with everything I said. He also said he would get in touch with the Gyno and get things moving. We will see what comes of it! They will probably put me into hospital over night and give me the progesterone and then monitor me for any signs of an impending attack. They have the information needed on how to stop one (which I found) if needed.

So I guess it's a case of one step at a time, and trying the progesterone first. I had another blood test done to check FSH and iron levels as he said I was to pale and also the lines on my palms were almost white showing some amenia. I have been taking a few iron tablets and eating more red meat (Now I know why I have been craving it so much) so will get the results of that by Thursday.
I have taken some pain killers and feel a bit better at the moment. Just want this nightmare to be over.

Thank you for sharing all the things you guys have had to go through as well. So many of us here have either gone or are going through the same kind of things. It breaks my heart and I wish that I could make you all feel better too. There are so many woman in the world all going through this that it is very worrying.

I have taken all the advise on board and am starting to put things into perspective a little better.

Again thank you! I was in a very dark place this morning (It has been building up for a while) and without your support and love and advise and kindness I couldn't have gotten as far as I have today! Your strength has helped so much.

post #23 of 41
Honey - you know I am here for you! Everyone has given great advice. The only thing I can add is a hot water bottle may help ease the pain.
I know how much you want to be a mom, but your health has to come 1st. You are an amazing woman and you will get thru this and be a better person for making it thru this. If you have to have a hysterectomy then you know that it doesn't make you any less of a woman. Keep strong and email me anytime!
post #24 of 41
Bundy, honey, there are worse things than NOT having kids. And, trust me, a hysterctomy DOESN'T make you less of a woman. I've still got my ovaries and at almost 45 with a wonderful, gentle man, WOW!

Its good that you're, finally, getting some proper attention, from a doctor. Even, today, too many doctors tend to dismiss "women's problems". Not to be sexist but, I've usually had better luck with a female gyno. More empathy, at least. Also, exams are less uncomfortable - smaller hands.

Keep fighting, for good treatment and I hope that you get relief.
post #25 of 41
Leslie, I am preying that this is the beginning of your road to recovery.

You know, sometimes letting the doctor know how you are really feeling is what actually gets results. Tears are good. We tend to walk into a doctor's office and most of the time, we want to be tough and try to portray that we can handle anything. Showing your tears jsut proved that, no, you can't do this anymore and that yes, you desperately need him to make decisions. He's seen the true you now. And now, give him the chance to prove he can help. I know that this has dragged on forever but, perhaps, in your last appointments, he got the impression that the situation was not as bad as it really is. (not sure how your last appointments went though so this is only a thought). I'm just guessing that maybe in the last few times, he got the impression that you were willing to try different options first.

Good luck and keep us posted.
post #26 of 41
Oh Bundy....how horrible for you.

I am not an expert by any means when it comes to the human body. But, I have had many illnesses that have affected my family. There are some horrible doctors out there and some really amazing ones. Unfortunately it is up to the patient many times to weed through the bad ones till they get one competant enough.

If you have a complaint with a doctor speak up. If you don't think you are being heard, get a referral to another doctor. Make yourself loud and clear when you have concerns. Never let them tell you to go away and do your own research!

I guess for many generations it's been the norm to "trust" what the medical community tells you and go on your merry way. Well, this generation is no longer seeing the doctor's word as God and starting to fight for their own rights. Always listen to your gut and make your concerns their number one priority. It can be difficult, but it's your future and health we're talking about.

Hopefully your doctor will now give you some alternatives. You mentioned before about seeing a Naturopath. Did you just go to one or many? Again, there are good ones and bad ones out there and you might find they have the answer.

My friend has been battling her body in a similiar way. She bleeds maybe 20 days out of each month and her body is severly allergic to many medicines. So I do have some understanding of what you go through.

As others have stated, do not just throw the idea away about a hysterectomy. For many people it has been a life saver, even at a young age. Educate yourself (as I know you will) and make the best decision for your life. Don't do it if 2 doctors tell you. See 6 doctors and then make up your mind.

Sending all positive thoughts for some medical advice that will help you through this.

And I complain about my once a month visit!

Nakita and I are sending only our warmest hugs your way!
post #27 of 41

I am glad you got his attention at last! I hope they can figure this out and even you up a bit. I know how distressing a hysterectomy is- I had a total one at the age of 21. But I also know that it meant leaving behind those god-awful cramps, bleeding and other female problems I was having. No, I could not have my own children- but today I have remarried a wonderful man, have 5 step kids and 15 step-grandchildren and enough love to go around for all of them!

Keep your chin up and your resolve strong- sounds like you are finally finding a way our of your nightmare!

Hugs ((((((((()))))))))))
post #28 of 41
Leslie, I am glad you're feeling better and that at last your doctor might start getting things to move. Doctors do sometines need that gentle push and nudge

One thing I have learned in the past couple of years is to always do my own research on the net when it comes to medical problems (human or feline). My husband has been ill for some time now with a yet undiagnosed liver problem (complicated by a viral infection). We are both now quite the experts on liver problems we feel that we can talk to the doctors in the same level - honestly, many of them, even the so called experts, don't know much off the top of their head - not when it comes to the more rare and complicated stuff. There are excellent websites on the net for every kind of disease - I would just go to websites that describe all sorts of gyno problems and start there. Look for everything that has your symptoms and then explore those possibilities. Try to contact women who have has the various medical problems you suspect you may possibly have - many of them have set up websites about their conditions and you can contact them by email. You can get help in understanding your lab tests as well.

In my view, sometimes you just need to play doctor as no one else is going to do that for you. With hubby's condition we ended up contradicting one of the doctors' diagnosis (and were later backed up by the real liver experts) and asked for tons of important tests that most doctors don't even know about. We have see the top hepatologists in the country and it was very interesting to discuss it all with them.

I'll be sending you good vibes from this side of the planet as well! Stay strong sister!
post #29 of 41
oh honey,
i am sending all my healing thoughts and prayers your way. try to keep your chin up!
if you ever need to talk, i will be here for you!
i have never had a problem like yours but i can relate to being in a "dark place"!
take care of you!!! i care!
post #30 of 41
Dearest Leslie

I'm so sorry you are going thru all this! Sending many warm hugs that you feel better soon, and keep up after those docs to listen to you.

Perhaps the next step is to ask for a referral to a University clinic where the docs are trained in the most up to date procedures? In the US when the family docs cannot find a solution, it's time to try the University docs.

Take care,
Maui (fellow Russian Blue mommy)
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