I am coming up to 58 in October and have been having what feels like constant period cramps. I did get referred to a gynaecologist a few years back who told me I should see a psychosexual councillor????? I left that appointment wondering if I had turned into someone else as none of what she said referred to me.
My GP referred me for an internal scan and it was found that I had a massive fibroid. I had the scan in the morning and the GP was calling me the same afternoon. She said unless its causing a problem they usually leave them alone because of all the issues with prolapse.
I am thinking long and hard on this one. I have been referred to see the gynaecologist again in August and I just don't know what to do. I don't like the cramps but I am worried about being taken off hydroxy for surgery and the risk of prolapse.
Has any of you ladies had a hysterectomy while having an MPN and taking hydroxy?
Any advice will be gladly received.
God bless
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jillydabrat
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Well being male, I can't answer from the female perspective, but I have had three surgeries myself in recent years. Green Laser PVP/TURP (prostate surgery - worst mistake of my medical life) actually put me back on HU (after 5 years off it) due to significant reactive thrombocytosis. I also had a heart surgery 5 months after that (catheter ablation). Did have mild reactive thrombocytosis to that despite being on the HU at the time. Spent a year on the HU this go around before I came off it. Now the interesting part, I consulted with a true MPN specialist who looked at my individual PV profile and took me off the HU. Said the risks were not worth the benefits for my variant of PV. Particularly in light of the fact that I was showing clear signs of HU toxicity at low dose levels. He also looked at all of my labs and determined that my risk of hemorrhage was greater than my risk of thrombosis due to how my body reacts to elevated platelet levels. The MPN specialist took me off aspirin too. Prophetically said "you really do not want to get a brain bleed." Two weeks later, I was diagnosed with a hemorrhagic brain tumor. That lead to my third surgery in 1.5 years - a craniotomy - resection of tumor (June 17, 2019). This time no HU - no Aspirin of course (true for all surgeries). My platelet levels jumped up to 829K after the brain surgery, but a couple of weeks later dropped down to 468K all on their own - no HU or other chemo.
The whole point of sharing the long version of the story is that we can each present with unique variants of PV or any MPN. Having the same diagnosis does not mean our symptoms, risks, or best treatment protocols will be the same. That is why it is so important to have a true MPN expert/specialist involved in your case - not necessarily your local hematologist. You need the best individualized tx plan possible and when contemplating ANY surgery - consultation between the surgeon and the MPN Specialist.
Comparing male prostate surgery to female fibroid surgery is a bit of apples and oranges, but there are parallels. Any surgery that involves our genitourinary systems can have very significant adverse effects. I know this from personal experience. The urologist who did my surgery did not bother with consultation with hematology and did the surgery in a very aggressive fashion. I foolishly trusted the wrong doc, who performed the surgery in a fashion I would never have consented to had I only known what he planned. Perhaps appropriate consultation between the docs would have prevented the unfortunate outcome I had.
It sounds like you are proceeding cautiously, which is very wise. What I discovered with the three surgeries is that not all docs treat informed consent the same. Some docs. like my cardiologist and neurosurgeon, are very thorough and explain everything. These more responsible docs do not do anything without consultation with hematology and take the PV into consideration. Other docs, like my urologist, do not bother themselves with meaningful informed consent, so not bother with consultation with hematology, and ignore the PV when performing the surgery.
I have emerged from all of this a much better informed advocate for my own health. I have learned that assertive patients get better quality health care. Passive patients do not. For all of us with PV (or any MPN) - we have specific needs that must be addressed when any surgeries are under consideration. Please be sure to insist on communication between a true MPN Expert/Specialist and the Gynecologist-Surgeon - with you in the loop and in control of this communication happening. With the MPNs being so rare, most docs just do not know what they need to do to take care of us MPNers.
If I could go back in time, I would not have done the prostate surgery. I would definitely have done the heart and brain surgeries. I hope you get some good feedback regarding what to do regarding the fibroid. The answers are not always clear and it is more complicated when you have PV. You will be in my thoughts and prayers. All the best.
Thanks for your very informative reply Hunter. You have made me realise that if my gynaecologist does not bother consulting with my haematologist I will definitely not give consent. As far as I am concerned my haematologist is top dog in my health care.
You are correct, I am being super careful because this might be my first surgery since being diagnosed. I did have a gastric bypass shortly before I was diagnosed but my surgeon took my 3 DVTs into consideration and I had a small cage inserted into the artery in my neck which they guided down to my groin inadequate I had any clot residue which could break free during surgery. He was amazing.
You are the ultimate professional with all your surgeries, especially the brain tumour.
Wow Hunter! You’ve been through a lot in the last while! I’m glad you made it through. I’m sos sorry for tour urological experience. I’ve deal with several urologists and they are a species in themselves. Thank you for the strength that you pass kn to us all! You are so right about advocating for ourselves!!! We have to be our own manager and demand respect. So many patients don’t get that.
Hi, I have had lots of ops but I’m not on chemo meds so can’t help there. I always make sure my haem and consultant for the op are both aware of the procedure and my problems. I get bloods tested on the lead up and obviously on the day and have always been giving blood thinning meds/jabs for about 4 weeks after the op. I also keep as mobile as possible post op.
Hope this helps. It depends how much your quality of life is being affected by the cramps, which are not nice I know. I had a hysterectomy in 2006. It’s a big op with a lengthy recovery but for my problems of cramps and very heavy bleeding, I’ve never regretted it. It’s hard if they take out your ovaries and you’re plunged into menopause but it was still worth it for me.
Good luck, get all the info together first and then make the decision for you. Kindest regards Aime xx😺😺
hi Jilly, so thankful you have had some helpful replies....this is just to say 'never forget you and wish yu well and please keep us posted how you are doing....you have been through so many tough times and do hope and pray all can be worked out for you now with kind and well informed people surrounding you all the way....love from Tinkerbell
One of my best friend’s daughters had a huge fibroid and several smaller ones. It was like a grapefruit. She had a lot of pain They found a really good surgeon who tried everything possible to first treat, shrink, then operate. Nevertheless it was still really big. She did the operation (she’s 34 and wants to have kids) and it went well. She removed the growths and her uterus is in tact. No historectomy, which is probably easier for the doctor, but may cause complications and long term changes for a woman physically, psychologically and also hormonally. Please inform yourself. Read up and find the best surgeon possible. Make sure there’s a good connection between your surgeon and MPN specialist. Ask lots of questions! Listen to Hunter!
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How do you cope with the fatigue.
Platelets up a bit
ET, running, fatigue
Juat diagnosed a few days ago..
