ITP and gyno, gyno and ITP

I would love advice from women who have or are going through what I am.

Last November I turned 30. Two days later I started my period which was abnormally heavy and clotted. It lasted 11 days which also was abnormally long. Prior to my decline I was a 5-7 light regular gal. No problems. December came and the same thing started and to this day has not stopped. 60 days and counting of medium to extremely heavy bleeding. I went to see gyn after the first of Jan and he "thought I had normal problems" and put me on birth control pills 2 every 6 hrs. He did blood work and found my platelets to be at 11. Called me in the next day for more blood work and they were at 12. Sent me home and said I needed to see a hemotologist. I didnt make it to the end of that week before I was in the ER and needing blood. I received 3 units, the depo shot and then iv estrogen. Saw hemo and he put me on prednisone for 10 days. Platelets came up to 398 then he put me on an iron iv. He said go back to gyn asap, that he couldnt make the bleeding stop just treat the blood. Saw new gyn today. He said the reason Im bleeding and cant stop is because of the ITP and because Im over weight. Boy isnt he just brilliant. I thought ITP by definition was an unknown cause. How can that be with my levels back up? I've been big all my life and never had problems. Anyway, he did an exam, had more blood drawn and did a biopsy. Next is a sonogram. He says ablation is next depending on results. Everything I've read says that women end up getting a hyst 1-5 years after anyway so why is it so hard to find a gyn that will do that? I had a tubal when I was 22 and I have two kids and do not plan on any more no matter how many times the gyn tells me all women change their minds.
Does this sound familiar to anyone?

Sounds really familiar to me, only difference is I am a fair bit older and so the whole changing your mind about having more children wasn't an issue. I had bleeding pretty much continually for 8 months, sometimes heavy sometimes not so heavy.
I was lucky I found a gyno that decided to look at the ITP and the bleeding as two different issues, he didn't call it a period because periods don't last that long, if you are bleeding for that long there has to be a reason. I had a ultra sound done and had fibroids and some where very large, we decide to go down the fibroid embolization route, I was lucky and my counts were around the 90 to 100 to have the procedure, I was also on prednisone at the time.
The embolization was a breeze but the pain after was horrible and it lasted about two weeks, but many drugs later I am so glad I had it done as I have not had a period since.

jdarlin I do hope you can find a doctor that will help you with this as bleeding like this limits what you can do and where you can go. I am not a super model either but I don't know what weight has to do with ITP, I think ther is probably some pretty thin people with ITP lol.
Any questions please feel free to ask. Oh and by the way welcome to our group, great people on here and you will find lot's of information and support.

Oh thank you!!
Yes, that is my (secret) goal to not have a period ever again lol.
I got my cbc results and my platelets are back down to 33 so I have to start prednisone again and see the hemo Monday. I know thats not near as low as a lot of women on here and I have a lot of respect for those who have lived with ITP and heavier than heavy periods most of their lives and/or for a lot longer than I have but this is an acute onset and I have to admit Im scared.
I think at this point it would be a set back to start over with new doctors since this hemo and this gyn have all my work.
The gyn is now waiting for levels to return to more normal and edmb to come back and go from there. He is a jerk in my book but he has done more so far than the other I have been to. He is also motivated to get whatever done before the end of the month and Im for that!

Milly I could not imagine bleeding for 8 months! Did you have to have any transfusions??
Is/was your ITP acute or chronic? I ask because I was told acute can last up to a year which seems pretty long. I need to find out what constitutes acute from chronic.
Thanks again for the welcome and for replying.
I am so glad I found this site, makes me feel less alone.

You are more then welcome. Yeah 8 months was a long time and my GP was a bit slow to refer me to a gyno, mainly because he thought I was dealing with enough at the time, 75mg of prednisone didn't really make for a happy camper ans I had lot's of other problems with thyroid and parathyroid, hpylori and the ITP, so I think he was just trying to deal with one thing at a time.

Yeah I did have blood transfusions and just about every other transfusion you can think of, was a rough time;)but I wish it would have been fixed earlier.
I can understand not changing doctors, it is such a hassle and I had a good talk to my GP the other day and I can now see his point. The gyno that I went to was prepared to do the embolization with lower counts is needed, he was just going to transfuse platelets if needed but I was lucky and didn't need that so that was a plus. At the time I honestly thought I was going to die from the pain of the procedure and I could have done all sorts of unspeakable things the the gyno and we had a laugh about that later when I was better. But now that problem is solved I am so happy that I done it.
I am not really into labels with ITP because I think that it can come back anytime, my doctor classes me as chronic he told me that remissions can last a short or long time but you should always tell medical people that you have ITP.
Hang in there it will get better, I am sure that embolization would be available in the USA and it is a bit more permanant then ablation but you need to find out if you have fibroids or maybe endometriosis, I have that as well.:ohmy:

ITP should not cause continuous bleeding. It can cause heavy periods and clots when counts are low. When counts are normal, the period should be normal. If it's not, there are gyne issues.

I hope they find the cause. If you don't like this GYN, find another one.

Thats what I think, there is something wrong with my woman parts that is causing all the bleeding. Get that fixed and the ITP may go into remission and I may be lucky enough to never have another episode. Or Im just being stupid and wishful thinking.
Just have to get the levels up so they can do something about it. Or like Milly said and have a gyn/surgeon prepared to do whats needed with transfusions at the ready.

The gyno telling me Im bleeding because of the ITP and being big does show his ignorance a bit imo.
I do have an appt. with another gyn at the end of the month which I'll keep if I dont like this ones course of action. At least by then I'll have all the results back and hopefully wont have to repeat anything.
I dread to see what 40 holds for me lol. And to go from not needing a doctor for 8 years to needing more than one in 3-4 months. Good grief.

Thanks Milly and Sandi!!

I need some more logic help here please.
The cbc results from the gyn office said my platelets were down to 33 on Thursday. They fax the results to the hemo and he said to get back on prednisone. I had enough to do half dose each day until I saw him on Monday. His blood work showed my levels to be back up to 205 by Monday. He said he would "ignore" the gyn's results as he couldnt tell if it was accurate. He put me on a low dose prednisone at least until I see him again next week. If the prednisone slows the bleeding but I cant stay on it for long then what is going to happen next? If I stop the prednisone will the bleeding start up again? If I get the ablation and it stops the bleeding will I start bleeding from somewhere else? Should the ablation even be a consideration at this point? How can the bleeding go from full on rage to a near nothing crawl in three days? My hemoglobe level was 8.6 when does that get down low enough it becomes worrisome? Hemo said if I dip again he wants to do the bone marrow test, how bad is that? But why would I need that if he is ignoring the dip?
If it is the ITP and not the dub then what is next after prednisone?
Why do we pay doctors that cant answer these questions???
These questions are not in any organized manner and I know they dont make much sense but I hope someone more sane than me can understand it and explain it to me.

The only bit I know about is that ITP doesn't have an unknown cause any more as we know it is an autoimmune disease caused by antibodies being produced against the platelets.

Oh and the bone marrow biopsy is not at all bad.

How much Prednisone were you taking? Some people respond very quickly and could have high counts in a few days.

If you get the ablation and you weren't bleeding anywhere else before, you probably won't bleed from anywhere else after it.

There are several options to try after Prednisone - you'd need to discuss that with your doctor.

The bone marrow biopsy is not that bad.

Doctors cannot answer all the questions because the answers are not available. The body is very complex and the understanding is growing, but it's a slow process. It's like space exploration - very vast area and much not enough resources available to know it all.

I think before you do anything, you need to see a GYN who can do more tests and see if there is a reason for the bleeding.

Initial prednisone dosage was 160mg a day for 10 days. Platelets went from 28 to 398
Hemo did not tell me to taper so I had to figure that out myself.
Weekend dose was 80mg a day for 4 days. Platelets went from 33 to 205
Now he has me doing 4 for 2, 2 for 2, 1 for 2 and a half until all are taken on 5 mg pills.

I apologize for not thanking you all in advance so
Thank You!!

I am trying very hard to remember what you said Sandi about ITP not being a cause for continuous bleeding.
Can you tell me what other tests could be done by a good gyn to eliminate other causes of bleeding? They checked thyroid, did the emb and a very intrusive ultrasound yesterday.

Thank you again!!

80 mg's a day? Yes, your counts could go from the 30's to the 200's in four days with that dose. I'd guess the GYN's platelet count was correct.

Sorry, I don't know what other tests could be run. I'm not all that familiar with gynecological issues.

If it is endometriosis the ablation will not help, the only way to dx endometriosis is with a small surgery where the put a camera in a small incision in your stomach to check for this condition, I had a lot of pain when I had it and the pain can go down your legs, The treatment is a hormone implants but you can't have it for more then six months.
The ultrasound would show fibroids.
I would try to find out what is causing the bleeding before an ablation because if it is endometrosis ablation wont help.
Bone marrow test are not fun but some doctors are pretty good at it and it is not as bad as you think it will be, the pain is really short lived and after I have been fine.

A doctor once told me that bleeding like that has to have a reason and sometimes you just have to keep looking until the right reason is found.
Good luck with this, I know how frustrating and restricting it can be.

Went to hemo today.
Platelets are back at 30 on a low dose of prednisone (5mg a day).
He says back to 150mg a day and if I dip again on the taper Im headed for splenectomy.
Now I have to wait even longer for the gyn to do whatever he's going to do to try to stop the bleeding.
This is so frustrating!

So there's nothing in between prednisone and surgery? No other options?
There isnt a blink when it comes to taking out a spleen but try to get them to do a hyst and they run away. Go figure.

Yes, there are many options! Girl, get a new hemo!

Thats what Im thinking!

did you get the results of the ultrasound? My ITP was diagnosed by my gyn. I went to see him because of the bleeding/clotting and the ultrasound showed fibroids. He gave me Provera and it's been undercontrol ever sense.

A different nurse called from the gyn office yesterday.
She said that the biopsy came back normal so I asked about the sonogram and she said there is something noted on there as pre-fluid?? She did not know what that meant when I asked.
See gyn tomorrow so I'll ask him again and I'll see if I can get any words in about doing the ablation when my platelets come back up next week?

I really do not want to get the splenectomy. There has to be something else to try first. I am calling around for second opinions. If anyone has a recommendation for a hemo in Lubbock Tx please let me know. The bleeding has not stopped (72 days today and counting) and I cannot seem to shake these sinus problems.
Can I get an antibiotic with the prednisone and bc?
The nurse at the hemo office brought out a beast of a blood pressure machine and my bp was 170/110. How can I get over this irrational fear of that thing?
Any more advice would be totally awesome.
Thank you very much!

Wow 72 days, have they tried tranxamic acid or Zoladex implants just to get the bleeding under control short term.

Nope.
They just keep giving me bc pills and more bc pills and the depo shot and premarin.
Nothing has stopped it.

Any interest in traveling to Houston? My hema here is great. I know how long that drive is though

Id consider it if I could get in and done on spring break lol.
I've got a friend in Houston and she really liked her hemo there too. I hear M D Anderson there is awesome.
Have to work with what I've got I guess.
Gyn says see hemo, get platelets back up and we'll do ablation next week. If it doesnt work he recommends hyst. He thinks I need to avoid splenectomy as much as possible. So we have a plan.

you can also go to hematology.org, under patients and find a hematologist. You put in your address and the specialty you are looking for (Something about platelets) and it will return those in your area. May be a starting poinjt if yours isn't doing what you would like.

Went back to hemo last week and on 150mg of prednisone platelets were going down from 90 to 78 over a weeks time. What does it mean when the response stops or slows down like that?
So he ordered three treatments of dexamethasone iv. Is there a different goal with that than with prednisone? Did that Monday-Wednesday.
Last night serious cramping and heavier bleeding started again.
Gyn wont do anything with platelets under 100 and Im betting when I go back to hemo on Monday they wont be any higher than they were last week.
What does it take to get the bleeding to stop???
Is there something the hemo can order or send to the gyn to get him to try to stop the bleeding with the platelets where they are?
Its been 88 days of bleeding and I know history repeats itself but come on, it hasnt even stopped and it feels like its starting all over again!

I do really understand how frustrating this is, been there done that. The things they tried with me was tranxamic acid for four days helped a little bit but didn't stop the bleeding then we tried zoladex(hormone implant that is usually used for prostrate cancer) that worked a treat and bleeding stopped about one month after first implant. The zoladex was used as a short term treatment (four months) until I had the embolization.

Have they yet worked out what is actually causing the bleeding?

Unfortunately no.
Nothing has turned up in anything. Everything looks or has tested normal.
The gyn said its the outward means of bleeding for the ITP.


This seems to run in a pattern to me but I could be wrong. I had the iron iv, two days later the bleeding got heavier with the cramps and I got sick with sinus problems. I had the dexamethasone ivs, two days later from the last one the bleeding got heavier with cramps and I got sick with sinus problems again. Is this more than likely coincidental due to the weather or season and Im thinking its something its not or could there be a trigger there? Just seems weird.
Also the bleeding and cramps only come on during the evening into the night but the next day to the following evening its light and no pain.
What is going on here???

Does ivig work when iv steroids dont?
platelets went down to 28 from 78 after the three dexamethasone iv treatments.
Hemo wants to do ivig to see if I respond and he's already got an appt for me with a surgeon this afternoon. :blink:
So I guess Im headed for splenectomy/hysterectomy?

talked to surgeon and he says he can do splenectomy next week.
no.
he says go see his daughter the gyn.
I go. She says no ablation, no hyst until after splenectomy. she's only been practicing for one year. she has no experience let alone with itp.
no.
i give my gyn a call and tell him whats going on. he says get splenectomy. he is positive ill stop bleeding after that surgery and wont need anything else ever.
no.
Why on earth are they so for doing that surgery??? Why on earth are they so convinced that the bleeding they cant stop is to be blamed on the itp???
I refuse to believe thats the cure all they think it is and that thats my only option.

This just seems to be going around and around, you must be so frustrated. I would be askinga few questions
1. Was the bleeding there when your counts are ok?
2. What where your periods like pre ITP dx
3. If it is the ITP causing the bleeding why hasn't it stopped when your counts have been higher
4. Do you have any other signs like bruising?
5. What is the plan if they remove your spleen and you are still bleeding?

I would be searching for a reason for the bleeding, there has to be something causing it.

I can answer a few of those.
1. Yes still bleeding when my counts are good. Light but still bleeding.
2. Periods were all normal (5-7 days of light to medium flow) pre ITP dx.
3. That I dont know but I'll ask.
4. I do not have any other signs. No bruising, no petechie. All cuts stop bleeding under 1 min.
5. To do ablation or hyst provided the cause of bleeding is "identified".

How can I make doctors who have no clue but think they do listen??

The gyn said its the outward means of bleeding for the ITP.

That makes no sense.

i give my gyn a call and tell him whats going on. he says get splenectomy. he is positive ill stop bleeding after that surgery and wont need anything else ever.

That makes no sense either.

They sure are making you run around!

I never had any problems with my period unless my counts were under 15. Above that and I was normal. I'm sure some people can experience more bleeding at higher counts than that, but I'd question ITP being the problem if counts are above 75k.