Prolactinoma: Living with a pituitary tumor & how I found out I had a prolactinoma.

[@jocysaculo2468]

Thank you for sharing your story. I was diagnosed with prolactinoma too. My prolactin level is at 881. :( I feel like alone and fighting my secret battle but my faith with God is getting more stronger. To everyone who has the same illness, I’m praying for you guys! We will get through this! :)

[@eepinow]

In the male, a prolactinoma usually shuts down testosterone production and causes hypogonadism. I found bromocryptine brought me back to normal male levels !!

[@madelinegarris4620]

So glad i found this video. Everything you said is exactly what I’m going through. I’ve never felt so physically, emotionally, and mentally drained from this. Praying for you and i hope everything gets better for you 🙌🏼

[@JessicaSimone]

Yes girl. I just did an update and I am in a better space. How long have you known about your disease?

[@madelinegarris4620]

Jessica Simone just watched your update video! I’ve known for about 2-3 months. But as soon as i got off of my birthcontrol in May i experienced the same exact symptoms as you. i just knew something was wrong with my body. Its taken months to get answers but it was because of my last OBGYN so i made a switch and just like that within 2 months i finally had answers. It’s definitely been a struggle

[@aaliyahkanue]

I am been through worse and plethora of existing health conditions. Hyperprolactemia is making everything worse. I have never felt this much drained too both emotionally, physically and mentally. I am simply all over the place just couldn’t focus on my work very foggy, fatigued and stressed. Of course weight gain and weak bones

[@sharoncastaneda1058]

My story is similar. Discovered mine after my system went haywire after stopping the pill. After tons of bloodwork and MRI we discovered I had a 6mm prolactinoma. I took both the bromo and the cabergoline (one then the other, don’t remember which was first though). After about a year-year and a half my system was healthy enough to be able to get pregnant. My son is 4 now. I just wanted to share that with anyone on that journey, because I KNOW how hard it is. I remember crying in the endocrinologists office every 6 weeks when my levels weren’t there yet, and every time I took a negative pregnancy test. However after my son was born my prolactinoma symptoms have returned and events in my life have led me to not be financially able to seek treatment for it currently, I hope to have that rectified within the next year but it’s so nice to see a community of people who understand my struggle. Much love to you all.

[@sharyce536]

Sharon Castaneda thank you for sharing ❤️

[@SaritaBug]

Thank you for sharing your story. I’ve been living with a prolactinoma for 17 years. It started out at 3mm and has grown to 7mm x 1cm and is wrapped around my right carotid artery in the right cavernous sinus. I tried cabergoline and bromocriptine several times but the side effects were too much to bare and I was taken off of them. The nausea, vertigo, and overall fatigue and sick feeling were bad, but the mental and mood changes were the worst. I had deep depression, anxiety, and even hallucinations at one point. I am likely going to be put back on medication due to the fact the tumor grew recently and am meeting w new drs out of state soon. I haven’t met anyone with this disease in all the years I’ve had it but would love to form a support group to talk about our issues and things that have helped. My headaches are getting to be debilitating, and have been daily for 4 months w no relief from medication. Hope to hear from others out there. Thanks again for your story and kind words of strength. ❤️

[@jenniperkins4260]

CzernK19 similar story as me except I can’t get off the cabergoline even if I miss a Dose I can tell it messes up my whole body. How do you handle your hormonal imbalances and body changes. My fam has been trying to get me to consider surgery for years.

[@JessicaSimone]

Oh my goodness! 17 years?! Wow!!! Wow!! Wow!!! Have you considered surgery? I am curious if you have kids, as we are now on that journey.

[@JessicaSimone]

J P everyday has it's own challenges. I have been implanting a variety of things. I actually just posted a super quick update video on my channel talking about my blood levels and things I am doing now.

[@melodicbeauty84]

CzernK19 same situation only mine got so large that it was pressing against my optic nerve and I had to get it removed. I haven’t had a period in 10 years which means I’m producing little to no reproductive hormones. Now I want to try to conceive but I’m so afraid it won’t happen for me! I feel your pain and truly know what you’re going through...many blessings to you love! ♥️

[@jesussaves1827]

Hi CzernK19 I hope you are doing well now, please turn to Jesus He loves you and can heal you, He is the God of miracles, God bless

[@nicolehernandez3473]

it's so crazy that you just posted this now because I have my neurosurgeon appt tomorrow morning. Thank you so much we should keep in contact.

[@JessicaSimone]

Nicole Hernandez omg prayers and good vibes sent your way. Yes absolutely would love that!!! All the videos I have found are four years old. Looking for a community who is going through it NOW.

[@jamiewilliams5994]

@@JessicaSimone Do you get bad headaches and migraines? It's a support group on Facebook for Pituitary Tumor. I can connect with you and I would like to become your friend. My number is 7579718816. I have a Pituitary Tumor and it's been a rough and life changing journey. Have not been able to work or go to college. Just text me and I'll tell you about me.

[@JessicaSimone]

How did your MRI go?

[@GodsChosenMekAmoR]

Thanks for sharing. I know you shouldn't look at a lot of videos before but it's good to have all information. I have my MRI tomorrow. My levels were 800 on my lab. I am trusting God for the best results.

[@rocker10dj]

Hey! How your mri went? Tomorrow I have mine and I’m crazy nervous

[@GodsChosenMekAmoR]

@@rocker10dj it was confirmed I think 8 point something in size so micro. Macro is over 10 and I went through all kinds of thoughts waiting to see if I would have to have surgery. I prayed and relaxed. Went to the endocrinologist and he said to me I am healthy and we do not need to rush into doing anything. He said we would wait a year and recheck it. He said it is most times an incidental find. Since they are not cancerous this is something they find in a lot of people once they die which means they lived their whole life with no clue it was there. He told me I am fine and I thank God. I did not have leaky breasts which was another blessing. Headaches still off and on but keeping my stress down has helped that. Eating better and exercise. I did go to the Optimologist to make sure it wasn't on my optic nerve and my vision only had a slight prescription change. I am so thankful to the Lord that I got good results. It did make me realize that I will not allow toxic people and situations to rob my life. Staying in peace and caring for myself is my new priority. I pray your results are good too. God bless.

[@Marbee514]

1MrsMeka God is good

[@ariendolorenzo8926]

1MrsMeka me too, 800 is my level I have 2mm now starting meds it’s hard

[@BarbaraKrieger]

My prolactin level is at 67.5 and I found out about my tumor in 2008- when i couldnt get pregnant. Fast forward to now I have three health boys and years of putting my body 2nd. Ive just dealt with the symptoms but now the pressure and vertigo and nausea is bad amongst other symptoms. Today i was prescribed CAB and I am reserved on taking anything for it because I cant keep a health regimen of pill taking. Im horrible at it. Im hopeful that this drug will subside my lactation and increase my dopamine- on top of this im also very very anemic and my ferritin is below normal. I hate feeling alone in this and I too put a smile on my face and act like everything’s great and suffer in silence. Thank you for sharing your story, i truly appreciate your transparency.

[@eepinow]

In the male, a prolactinoma usually shuts down testosterone production and causes hypogonadism. I found bromocryptine brought me back to normal male levels !!

[@charlesweigold6323]

I’m right here with all of you fighting day to day with this and feeling all alone in the world with no one to talk to who understands what I’m going through 😢

[@tenayanettles7371]

I was diagnosed with a prolactinoma in 2018 any side effects you can think of I had them. Nausea, headaches, dizziness, tender/leaking breast, blurred vision, even depression and anxiety. My OBGYN immediately did blood work and my prolactin levels were 236 I had no idea what this meant I was referred to a endocrinologist who was the worst! He didn’t explain the condition to me i still have no idea what any of this is he never talked to me! He orders an MRI and i was waiting on results for months but he never called. He actually forgot to tell me i had the tumor so he just sends the medicine (cab) to my pharmacy. it got my levels down to 65 still very high but coming down so I was excited to see what else he would do would be up my dosage would he recommend anything else but he did not. After a month all of my symptoms came back I called and scheduled an appointment with him he still didn’t tell me anything and he didn’t refill my medicine so I went to my primary doctor and he has helped me so much! He ordered a new MRI and he has referred me to a new endocrinologist which I’m supposed to go see soon I also have an appointment with a neurologist I’m really thinking surgery is an option for me because the medicines aren’t working and I just wanna be done with it all! I’m praying for you and anyone else dealing with this disease. Thank you for sharing your story! ♥️

[@tania7470]

I just had mine removed 2 weeks ago. Hopeing for a full recovery. I was diagnosed back in 2017. Medication wasnt tolerable for me.

[@tenayanettles7371]

How are you feeling afterwards?

[@tania7470]

@@tenayanettles7371 The first week was rough. I'm still very tired and my nose is still stuffy, cant smell completely yet. But it's not that bad at all. Now just hoping to start my period soon.

[@tenayanettles7371]

Praying that everything works out for you this is so scary but it’s nice to see I’m not alone ♥️

[@Lady-br3zy]

Ford Girl What state and hospital did you have it done?

[@numberone22459]

Thank you so much for posting your story. It really helped me💗

[@yvetteb.6079]

Thanks for sharing your story. I was diagnosed with a prolactinoma 20 yrs ago and just now hearing so many people’s stories and struggled with the same symptoms. I’ve heard a lot of people connecting it to birth control which is interesting. I was 17 when they found mine on an MRI and it was before I ever used birth control so I’m not sure if that’s a connection, but it’s frustrating they still don’t know the cause. I’ve taken cab most of my time with this but as soon as I stop taking it the horrible symptoms come back. Luckily my vision hasn’t suffered however my ears have, as if it’s putting pressure on a different area. It sucks, and I have thought about the surgery to remove it but I’m scared of that. Hope you’re doing well today!

[@xoxomangakcorxoxo]

Can medication permenantly remove it? Mine is very small (0.9mm) yet it still causes mood swings, breast leakage, and light headaches.

[@Tiajade22]

Thanks for sharing your story, I found out I had it last year, I'm on Cab too on half a tablet a week!v been over aw year hope your ok and get better cc

[@Marbee514]

Tia jade how are the side effects

[@loispowellmusic]

When I was 13 I had a blood test and my prolactin came back at 200. I had an mri but it took them a year to tell me I had a tumour. After a year they did another scan and I had a bleed so they started me on carbergoline. It was shrinking the tumour, but I started to get bad side effects. Seizures, and depression. After a few months of the meds I went into a psychiatric ward and they stopped the meds and planned for surgery. Apparently it was a macroadenoma with my levels at 6,000. They took it out. Now at 15 about to take my GCSES, it’s growing back 6 months after surgery. I have no energy. I wish there was more research into this.

[@areejbilal]

i hope you get better :)

[@jenniperkins4260]

Thank you for sharing your story. I’m taking cabergoline considering surgery.

[@yourfriendlyneighbor7141]

J P hello sweety did the medication shrink the tumor? I have a macroadenoma and I will star taking cabergoline

[@wasengi]

Wayne Bell. i am male and have travelled a very semiliar path to you with some variations, but here goes, i have what seems like a long standing health problem for many areas of my body, some as a direct result of being a victim in a road traffic crime inciddent and all the fallout that sticks with you for life, i regularly see specialists who give treatment to me but dont seem to access my medical records before they give me more pills or have me undergo surgery etc often with no positive outcome, but watching your video just now has after seventeen years of my health failing the light has dawned and yes, your right, there is no better specialist ao the subject of my body than i am, and yes i do need to take that truth and start organizing the specialist to meet my needs here and the errors they keep making as they dont seem to deal with me in joined up handwriting, its all fragmented, and remember folks after ten minutes of you putting down the phone after speeking with a health professioanal they have already forgot about you and the next patient is speaking with them. Im gonna draw out a small circle on paper, then enlarge that with a much bigger circle around it, im the one in the small circle, and i will divide the circle up into twelve segments, then write each of my health problems in each segment, then radiate each segment out to become a timeline and write down any up coming appointments with gaps between them, once this is laid out, i will easily be able to see which doctors are trying to tackle a specific problem i have, without them seemingly to have any knowledge off the other doctor and the helpful data that each of them have saved on their data bases, then i will begin to corralate theswe clashes and write down some short to medsium term goals on action planning to begin to join these people up, start to ,make some progress in bringing positive change quickly to my health challenges, Thank you Jessica once again, you can know that this day the lord Blessed me through your commitment to him to never give in, to be hope full for a future and to have a positive mind and approach throughout, May God |Bless you Mightily/

[@jessical.7750]

Thank you so much for sharing your story. I'm having so many terrifying symptoms and my prolactin levels are high. I'm currently awaiting my mri but deep down I know what the results are going to be and it's really just terrifying.

[@Sivapriyavaithy]

3years ago I found out prolactinoma 250level I'm having a pitituary microademoma of 7mm and after taking caberlin doc prescribed me and got concieved at 2months naturally with 90kgs now update with 2yrs old toddler and 110kg have to take my tab again to reduce level of prolactin as per doc advice Living with 5 years of chronic headache Those are all suffering my prayers and wishes to you we can overcome it❤❤

[@mindismallwood]

Thank you so much for sharing your story. My story is so close to yours it’s almost unbelievable. Praying hard for you. I go for my MRI on Thursday of this week. My prolactin level is at 487.

[@mayaburr559]

I was just diagnosed with Prolactinoma. My prolactin levels were over 200 lucky it’s a benign tumor because i spotted it so early.

[@JessicaSimone]

YES! Same. I just did an updated video on my levels and size of tumor.

[@hilaryforgie4498]

Prolactinomas stay benign majority of the time. It’s like a .1-.2% chance of malignancy. I have a micro one

[@meaganvalenti2946]

Ur story helped me and resonated so much with me. I am also diagnosed with the same and nobody understands!! It's so hard and people think I am fine when I am not. Thank u for sharing. When I heard ur experience which is a lot like mine too I didn't feel alone I'd like to try reiki next. I really think that would help. Also wearing lapis lazuli seems to help with the headaches I get from this too

[@bigbmaster11]

I got the same tumor currently taking cabergoline💊. Thinking about just doing the surgery to just get it over with.

[@ericbedford4826]

Ive recently been diagnosed with the same, caber makes it so hard to work. They said mine too small to do surgery. Hope you have good with it.

[@lisasallery7860]

Hi. I know you shared your story a while ago, however it’s been really difficult to find much about prolactinoma’s. I had cancer when I was 4. So I have had lots of issues with many different things, including fertility. I also went to my fertility doctor for help to have a a baby and they did blood work. This showed really high levels of prolactin. They also found I had hypothyroidism and was peri menopausal. I’m obviously not old enough to be menopausal. My prolactin levels have been checked numerous times and each was high. I also have kidney failure, intestinal failure, plus so many other health problems. I’m currently in hospital with kidney infections. I have a drain in my right kidney, had to have a ileostomy, oh and so much. But I found out about this problem with high prolactin. I am still waiting to see an Endo. Because I have so many problems so trying to get them all treated is so hard and I can’t seem to get anyone to do anything. I also have sight problems. Headaches, breast pain etc. I just don’t know what to do. I now know I won’t be able to get pregnant myself. I’d have to use a surrogate. It’s all very intense.

[@KG_lalalove]

I have prolactinoma. Have you heard of the 5 Tibetan Rites? Do this series of yoga poses along with your dr.’s plan. Made me get my cycle back regularly and normally. Hope you have had some relief and help

[@annapaez6244]

Thank you for sharing your story. I feeling the same nausea. And dizzy, breast hurt and leak milk, fatigue .i can sleep alot told my doctor he told me it was nothing . Another nurse partioner told my kidney werent working but it was simple uti. I hate that they told me wrong information. I know my body something is wrong. Now i have tumor in the brain . Since last year. I have feeling weird symptoms. Like ringing on my ears and dizzy, nausea, vomiting, irregular cycles,super tired i could sleep forever. Doctors ignored me and told me it was somethings else like sleep apenea or anemia, kidneys disease. I am 38 year old women married that tried get pregnant with no sucess. I guess am not alone.

[@Marbee514]

Anna Paez me too doll and doctors won’t listen

[@Marbee514]

Anna Paez no you are not alone

[@tania7470]

Anyone have heart palpitations as one of their symptoms?

[@ericbedford4826]

Yes, and severe fatigue. Almost like losing my breath.

[@thesweetlifeofjoy2314]

Yes!!!

[@JellyBelly2148]

Thank you for sharing your story. I think I'm going to get surgery for mine soon.

[@aaliyahkanue]

Thank you,I am going through a similar situation no doctor seems to understand or properly diagnose my problem although I have high prolactin and thyroid too along plethora of other health conditions but hyperprolactemia is making my conditions worse. I have also have these pressure or tension headaches, feeling overwhelmed stressed and depressed, have gained weight and extremely exhausted all the time.

[@samia7329]

My blood levels where218 but there going to do a MRI soon I pray that everything goes good I don't have breast tenderness and I did get off the pill like in June but thank you for sharing your story hope you get better

[@apple8727]

Hi Jessica! Any further updates on whether or not taking Cab is better for you? Do any of these medications reduce tumor growth? Or do they just stop tumor growth? Thanks for any info

[@monicacecil4984]

I had a pituitary tumor everything you explain is normal nobody understood how I was feeling always heread you being lazy and a baby want medicine nothing wrong you like being waited on no I didn't tried same medicine but ended up needed the surgery then went through my nose best choice I could of made after hospital doctor were telling me about it all said it was my final choice

[@chrismalisilver]

Thank you for sharing ❤

[@DebsDee-ek3lg]

Try Ginger for the nausea. God bless you xx

[@edenbugsby5935]

Thank you 🙂. Very good video x

[@arttali81]

I was just diagnosed🤦🏻‍♀️🤯🙄😮😭Thanks so much for this detailed vid...by the way how r u?

[@darlenebowers5207]

I am going through this too. It is horrible 😢 we gotta stay with Christ

[@JessicaSimone]

Darlene Bowers I am so sorry to hear this Darlene. It can get better! I just did an updated video two weeks ago. This is from summer 2018! ♥️♥️

[@darlenebowers5207]

Have you looked up the herb turmeric? Check it out

[@jyll.7132]

I'm hours away from getting the results of acth and prolactin tests back. Fsh and lh show a problem. I really feel like your description of starting periods pretty much describes mine. God. I'm terrified. I have a feeling this is what I have.

[@yelincastro3774]

Jyl is that what you had im terrified I am also getting a MRI tom to see if its a tumor

[@agnieszkatempczyk142]

I'm on Bromergocriptine I feel so bad

[@xoxomangakcorxoxo]

Can medication permantly remove my prolactinoma? Mine is 0.9mm by 0.8mm by 0.8mm and my prolactin level is 147. I have no vision difficulties and thyroid problems. The only symptom I have is breast leakage, light headaches, and mood swings.

[@Zx6RR-u3x]

I have empty sella. Male 29. For some reason i have high prolactin. 40 in the blood. When i should have unter 20. It's not pretty high i know. But i feel the same as you say in the video. Extreme fatigue . Depressed!im feel like I'm drunk all day 😢 it sucks . And no one around you, can understand how bad you feel! I had prescription for cabergolin but it was so much worse the side effects that i stopped it. But now i feel that it is elevating again..😢 so next week I will have new blood work to see where I am. Fortunately , this period I don't working. So I have the time to cure my self. For. Now lets go to sleep again.. 😴😅

[@eepinow]

In the male, a prolactinoma usually shuts down testosterone production and causes hypogonadism. I found bromocryptine brought me back to normal male levels !!

[@meadowwilliams8271]

Ty for this video! I just found out I have this tumor but I’m really scared because I’ve already had a serious stroke. I’m so scared. I DON’T WANT TO TAKE THIS MEDICATION. Any advice

[@happyturtle95]

My prolactin level is 1,418. I am so scared. Because of covid my doctor can't get me an appointment with an NHS endocrinologist until late December.

[@lauras627]

Hope you’re doing well

[@sumarafarquhar6707]

Hi Sylvia, do you have an update? My Prolactin levels were 1017 and I've been referred to an endichronologist in the NHS. I have my first appointment next week and I'm so nervous

[@happyturtle95]

@@sumarafarquhar6707 I was on fluoxetine (Prozac) and the endocrinologist thought it was because of that and stress. I came off it and my prolactin levels went down to 540 after 4 months. I thought that was still high. He was unbothered and discharged me. I hope you get a little more support xo

[@sumarafarquhar6707]

@@happyturtle95 thank you so much for your reply. I used my appointment with endichronologist on Wednesday. Did they do an MRI or anything for you? It's good to speak to someone from the UK who went through what I'm going through.

[@happyturtle95]

@@sumarafarquhar6707 They didn't do an MRI and were quite dismissive. How are you feeling? My GP thinks my symptoms are caused by PMDD and that the high prolactin levels were caused by elevated stress and the fluoxetine. I hope you get all the treatment and support you deserve xo

[@memesissydollar3080]

New sub . Thanks for sharing !

[@memesissydollar3080]

How are you feeling now ?

[@traceyallen6773]

I've justed found out I have this problume and I need someone to talk me through all this as I dont understand it much and how dangrouse pituitary lesion is the doctors are not show what lesion this is

[@Cabdiraaq1]

Thanks sharing your story iam uneducated about this tumor my wife get blood test and the result was crazy they told her she has high level of prolactin and she need make appointment for MRI I don’t know if can trust that blood test or go another

[@Cabdiraaq1]

I pray to Allah that goes away and enjoy your bright future and life

[@Hereforthetea12]

Anyone know if 54.7 ug/L is high enough for a tumor. I was 54.7 but went down to somewhere in the 30s. Could this still be a tumor. Has someone with my levels had a tumor. Not sure why it was 54.7 now in the 30s... pls help. Pls !!!

[@kerriemcbride6681]

I'm in the UK just come from doctors and I'm having blood drawn for tests on December 11th. I already have Functional Neurological Disorder (FND) and non-epileptic seizures is just one of 20+ symptoms. It also mimics other illnesses. I'm beginning to feel like a lab rat for conditions with no effective treatment. I had some of the same period problems but mine started at 8yrs old, birth control at 13 for 9years. Wishing you all the best.

[@jesussaves1827]

to everyone reading this please turn to Jesus He loves you and wants to save you from the pain you are going through, Only Jesus can truly heal you, He is the God of miracles, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, God saved someone from illness leading to death, There is nothing impossible to God, Its as simple as asking Him to show you He is there and if you really want to know Jesus will answer you, I know this because it happened to me when I called out to God

[@mkolamaganga736]

Amen dear pray for me . I have already told Jesus about this I know that I am healed

[@nucoluna190]

God bless and stay strong

[@Marbee514]

Hi what meds are you on?

[@hello-sz1fl]

Thankyou

[@averagejoe6687]

Thank you for sharing I just posted a similar story on my channel I’d love for you to check it out ☺️

[@mirellarox]

How are you doing now?

[@militant_rhone2931]

Is anyone here on Norprolac. Think the other name is Quinagolidine. I'm on this meds 75mcg

[@militant_rhone2931]

In addition it's every night that I have to take it.

[@emilyt.6752]

I have a prolactinoma and take bromocriptine

[@ledea5681]

Hi! How are you? Do you want to chiar privately? I would be very interested to know how you are doing and what your experience is.

[@yasmineabuzahrieh90]

Same thing happened to me

[@Jesus-xm5gv]

Breeding is THE EPITOME of SELFISHNESS. I realized when I was 5 years old that we eat animals and trying to be vegetarian is nearly impossible, therefore to bring more children into the world that will require more animals to be murdered to feed the children who never asked to be born was immoral. If I could see that at 5 years old how come the masses can't see that by the time they reach puberty to prevent pregnancies that will cause more animals to have to be murdered?? You can NEVER make sure your ancestors will be vegetarian. Therefore breeding is THE EPITOME of SELFISHNESS.

[@kiaradawneluciadurelle9666]

Volume sucks. So much feedback can’t even watch .

[@JessicaSimone]

Kiara Dawne Lucia Durelle yes it does! I filmed this a few years ago with terrible equipment and editing. My channel could def use an updated video. Sorry you feel like the video as a whole sucks. My only goal was to help someone with the diagnosis not to feel alone. ♥️♥️