Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: ITP and Endometriosis

ITP and Endometriosis 5 years 9 months ago #34961

  • Kass
  • Offline
  • Posts: 4
  • Thank you received: 2
I'm 35 and was diagnosed with ITP when I was 18 months old. My doctors monitored my condition closely until it became clear that prednisone was not going to help. The fear was that as an active kid Id fall off the jungle gym and hit my head....etc So I had a splenectomy at age 7. I was on penicillin until I was 18. The splenectomy seemed to help, although my immune system was compromised further. I got every flu and cold going around.
My periods started when I was 10 and were heavy as predicted. In my early 20's I had a laproscopy to diagnose endometriosis - bleeding outside of the uterus causing scar tissue to form on my ovaries and bowel. My ovaries had to be 'freed' and tacked to ligaments to fall back in to place.
Not long after this surgery, I started to have night sweats & hot flushes. My ovaries had gone into trauma mode and so started my journey at age 25 into peri menopause!
My FSH level was that of on old lady. I was advised to do an IVF cycle to put some eggs on ice. I waited a year until after I got married, and we did a cycle - I produced 8 eggs when they only expected to get 2. We ended up with 6 embryos - one of which we decided to transfer back into my uterus! Pregnancy was tough - my platelets dropped and I felt quite yuck - just wanted to lie down! My son was born 4 weeks early with low platelets, and a cephalohematoma on his little wee head. Daily Platelet tests out of my tiny babies foot was so hard to watch, but after 2 weeks his platelets started to rise. He was pretty Jaundice for sometime.
A year later, we fell pregnant naturally with our daughter. She too was born with very low platelets and had to under go daily testing until the platelet count was up.
I'm now in menopause and on HRT. No doctor or specialist has been able to link edometriosis with my platelet disorder - but I cant help but wonder if there are others out there with ITP who have a similar story? Anybody?

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42065

  • CMD725
  • Offline
  • Posts: 8
  • Thank you received: 0
I have endometriosis and ITP. Both of my babies were born premature and with low platelets. It has never been said if they are linked but I am now (I'm 30) getting hot flashes and have hormonal issues that are similar to menopause. What has gone on with you since this post....any relation noted?

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42069

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2327
Just curious - why do they have to be linked? It's more plausible that they are two entirely separate conditions.

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42070

  • Kass
  • Offline
  • Posts: 4
  • Thank you received: 2
My endocrinologist seems to think there has to be a connection between the two as they're both auto immune diseases. I take bio identical oestrogen daily and utrogesten (progesterone) for 10 days a month. This has helped with the hot flushes etc.

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42071

  • Kass
  • Offline
  • Posts: 4
  • Thank you received: 2
Of course its plausible. But my endocrinologist seems to think where theres smoke theres fire so to speak. They're both auto immune diseases. Platelets being low would add to the bleeding outside the uterus therefore causing scarring that is endometriosis. Yep, entirely plausible theyre unrelated but im not convinced.
The following user(s) said Thank You: CMD725

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42073

  • CMD725
  • Offline
  • Posts: 8
  • Thank you received: 0
I really feel that there is so much that is not understood. That every person has different experiences and that it is nice when you hear of someone that even remotely has the same kind of thing happening so you don't feel so alone. While I appreciate well educated "advice" and "feedback" sometimes I just want to hear "yep that happens to me too, maybe there is a link".

I am pretty convinced that a lot of my issues are linked as well, maybe not directly to ITP but maybe the ITP is being caused by something else....that's why most of the time it is referred to as IDIOpathic; nobody REALLY knows. I have read so many things, like fatigue is not caused by ITP but I really disagree. That I should be fine at 100K, again I disagree. Maybe I am more sensitive that most who knows....

Sorry for the mild rant.

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42074

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Endometriosis being an autoimmune disease is one theory. Another is that it is due to a poor immune system, the idea being that the immune system should be killing off the bits of endometrium that appear outside the uterus, but it fails to do so. ITP is another disorder that often goes along with an immune deficiency so an immune deficiency might be the link for some.

I have an immune deficiency and ITP but did not have endometriosis.

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42076

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
I get fatigue at a higher count too. That also, along with the ITP, is put down to the immune deficiency. Look up CVID and see if anything fits.
The following user(s) said Thank You: CMD725

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42077

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2327
CMD:

I never said that ITP does not cause fatigue. I agree that it does. But when you listed all of the other symptoms that you have, I suggested that you look at other causes since ITP does not cause all of the things that you mentioned. It would be a disservice to you to let you believe that ITP is the cause, because you may not keep pressing your doctors to check other things. You're looking to find people that feel like you, but I'm telling you that the people who do have Lupus, or thyroid disorders, or any number of other illnesses.

Autoimmune disorders can be linked because people who have one are more prone to have others. I have ITP and Lupus. My daughter has Graves and asthma. Ann has ITP and CVID. Others here have ITP and MS, or ITP and Chrones Disease, or ITP and RA....the list goes on.

ITP and Endometriosis can both cause heavy periods, but that does not mean that they have to go together or be linked in any way. Many people only have one of them and not the other. A person who has ITP with normal counts should not experience heavy bleeding and if they do, there is another cause. In your first post that listed your symptoms, I almost wrote that you should check into possible endometriosis or fibroids as a possible cause of the heavy bleeding. Now I see that you do have it....there is your possible answer. When your counts are down, yes you will bleed even more. A friend of mine had fibroids (not ITP) and her periods were as heavy as mine were when my counts were down. I wouldn't have wanted to have both.

I don't know if endometriosis can cause early menopause. The only way to know if you are entering menopause is to see your GYN and get a FSH test. If that is normal, there are other causes of hot flashes; the big one that jumps out at me is a thyroid disorder.

I am not trying to criticize you or upset you. I'm trying to help you solve the puzzle so you can get on the road to feeling better. Agreeing with you that ITP is the cause is not going to really help you. Seeing another Hemo and another and another is also not going to fix anything. I had ITP for 8 years and then started to really feel like crap. I knew ITP wasn't the cause and eventually, I was diagnosed with Lupus. Anything I have said was out of concern for your situation, not for the sake of disagreeing. Honest.
The following user(s) said Thank You: CMD725

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42078

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2327
Correction - CVID is not an autoimmune disorder, it's an immunodeficiency and shouldn't have been lumped in with the autoimmune disorders. It was just an example anyway, but Ann, I know you'll catch that one! ;) ;)

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42079

  • Kass
  • Offline
  • Posts: 4
  • Thank you received: 2
I have been pretty lucky with my counts since my spleen was removed when I was 7. I was put on daily penicillin until I reached 17. I still managed to get every flu and bug going around and inturn my platlets would plummet and id feel absolutely rotten. But all n all I feel I have lived with ITP really well. When I started to experience menopausal symptoms after a very invasive laproscopy for endometriosis, it was suggested my ovaries had gone into trauma, hence the flushes, memory fuzz and all those other things.
My thyroid is always the first thing my GP tests. Its always normal. Ive had natropaths treat me for adrenal fatigue. Ive also had testing antibodies that may be attacking my ovaries - but that was negative too. The list goes on.
I guess what it all comes down to is our need as humans to want to know why and how things are happening to our bodies. I can only attribute my infertility issues, hormonal and subsequent early menopause, to ITP because having read so much about my issues, it seems logical. I just put my story out there to see if any of you fellow ITP people had the same. If there was an overwhelming response of'yes I have' then id be inclined to keep pushing for more help. At this stage oestrogen is doing the best it can for me.
The following user(s) said Thank You: CMD725

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42109

  • CMD725
  • Offline
  • Posts: 8
  • Thank you received: 0
Ann; I have been referred to an imunologist by my GP. What type of specialist diagnosed your CVID?

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42116

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2327
Good start!

Please Log in or Create an account to join the conversation.

ITP and Endometriosis 4 years 10 months ago #42117

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
I see an immunologist. I believe in the US you have two sorts of immunologists, ones who deal with allergies and the other sort called something else! It's the other sort you need and not the allergist. An immunologist should do blood tests for immunoglobulin levels to start with.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo