Adenomyosis Story: My Adenomyosis Symptoms, Diagnosis Procedure & more!
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- čas přidán 25. 08. 2024
- Adenomyosis Awareness. April is the month for spreading Adenomyosis Awareness. Did you know that 1 in 100 women and people assigned female at birth suffer from Adenomyosis? Adenomyosis vs Endometriosis - these two diseases often go hand in hand yet they are completely different diseases.
Many Adenomyosis symptoms are also Endometriosis symptoms and vice versa which is why it is so easy to receive a diagnosis for one and not the other.
Far too often people do not get diagnosed due to other diseases that present one or more of the symptoms that characterize Adenomyosis and Endometriosis... and this presents a missed opportunity for those of us who suffer from getting proper treatment and it can also lead to so many more issues like damaged organs and a prolonged pain journey to name a few.
This is why I have made it my mission to share my Adenomyosis Story & my Endometriosis Story from the patient perspective with hopes that maybe my experiences can help you or people you know in the journey to diagnosis and to discover some tips or tricks to help along the way.
Don't forget to Like, Share, Comment & Subscribe to stay updated on upcoming videos!
Follow me on Instagram: @myendoadenoworld
Symptoms mentioned in this video:
- Abnormal bleeding & blood clots
- Severe pain
- Painful intercourse
Medical procedures/devices & medications mentioned in this video:
- Transvaginal ultrasound
- Lupron Depot
- Estradiol
- Progestins
- Intrauterine device (IUD)
- Add-back hormones
- Hormone Replacement Therapy (HRT)
- Birth control
Conditions mentioned:
- Adenomyosis
- Endometriosis
- Osteoporosis
What is Adenomyosis:
www.webmd.com/....
Adenomyosis vs Endometriosis:
www.healthline...
Think you might have Endometriosis? Join an Endometriosis Support Group
The Endometriosis Network Canada:
endometriosisn...
Speak Endo:
www.speakendo....
Share your Endometriosis Story: EndoAct Canada
endoact.ca/stor...
How to find a doctor - Women's College Hospital:
www.womenscoll...
Music Credits:
Music: Enough of You (Instrumental)
Musician: Velveteen
Has anyone here conceived with Adenomyosis or after they treated it ?
I'm sorry, I can't speak to this as I do not have personal experience.
Thank you for sharing. Anyone had Lower Back pain or constipation?
I constantly have lower back pain and sciatica more specifically. Constipation - yeap! I personally go from being constipated for days to going multiple times a day. When I had my Laproscopy and was diagnosed with Endo they found it on my colon, rectum, bowel amongst other areas. Post 1st lap I noticed a difference in my bathroom habits. I also periodically experience shooting pai s near my rectum that have been explained to me as likely endo related 💛🎗💜.
I have very bad lower back pain...
I'm sorry to hear you also experience this. The low back pain can be quite debilitating at times 💛🎗💜
@@NavigatingEndowithAshley yes it is
Yes, both...
Thank you for sharing 💞recently diagnosed !! Feeling very overwhelmed & in pain constantly
You're most welcome! When I was first diagnosed I too felt overwhelmed. I'm sorry that you are in constant pain and I truly feel for you. We will get through this 💜🎗💛
Lower Back pain?
@@charleasaj1322 I've had constant lower back and sciatic pain for years 😔
Thank you for sharing this! I just had my first lap for Endo a few months ago, but there's still so many of the original symptoms that I think might be adeno related. I appreciate you taking the time to talk through exactly what a tvu is like too, since it sounded a little intimidating. I have been looking for research on if TVU or MRI is better for diagnosing Adeno, are you familiar with any studies or experiences?
Hi Erin 👋🏼! I am not familiar with study results as far as transvaginal ultrasound vs. MRI for Adeno diagnosis but I have talked to many people on social media about their experiences. I personally am a tad claustrophobic and find the MRI process more intimidating because of the machine more or less. The good thing about both TVU and MRI is they both seem to be effective ways of diagnosing. I hope this is helpful! Thank you for reaching out! 💛🎗💜
I saw an educational video that said you *can* have both. I had no idea. 😢
I was just diagnosed this past Thursday and cried the entire rest of the day. I had been going from doctor to doctor for three years until one finally could explain what was wrong.
Does any of the medication you are on stop the bleeding? I appreciate your video.
Your comment brings me right back to when I was diagnosed with Adenomyosis. It's nice to have an answer but so frustrating to learn there is no straight forward answer of how to deal and cope with this 💜🎗💛. To stop the bleeding, all of our bodies function and react differently to medications... unfortunately I have yet to discover anything that helps over a longer period of time. My experience thus far is that some medications will work for a few months and then it's as if they stop working altogether. On the flip side I speak with other adeno/endo warriors who may try the same medication and have a way better or different experience. I hope this is helpful!
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Like mine the medication am recieving stopped my period
MRI can diagnosis also
Before I had kids, I had crazily Long, irregular periods and heinous cramps.
After kids, for a short while, my periods were awesome, 'normal'.
Flash to 3 years ago, suddenly I'm back to wacky cycles, terrible pain and anemia that never seemed to go away. Ended up having iron infusions because of them.
I got put on progesterone only pills last January. My cycles seem to just show up whenever. The pills help, but when I miss one by 2hrs, boom 💥 Heinous period.
I have just started my first pack of Slynd. Hoping it helps more. My next option is ablation, then last, hysterectomy. A bit nervous, as you'd expect.
Prayers for anyone dealing with Adenomyosis or Endometriosis.
These diseases are absolutely horrific. Thanks for sharing your experiences. As terrible as it is, it's so helpful to hear what others are going through 💛💜. I noticed you mentioned ablation - was excision offered to you as an option? Or perhaps have you had excision surgery before?
@@NavigatingEndowithAshley Excision wasn't mentioned. Dr believes I have Adenomyosis, not Endo after my transvaginal ultrasound. I am set to get a recheck in 3 months, so we'll see how it goes.
@SB just some food for thought. I had multiple ultrasounds and other imaging prior to having an exploratory laparoscopy, and no Endometriosis lesions were ever discovered. It was when I had my exploratory laproscopy I was discovered to have stage 4 endo. In case that is ay all helpful for your situation. We are all so different of course and I hope you get answers and relief 💜💛.
Thanks Ashley for sharing. You mentioned spotting, do you spot between periods aa well? I just got diagnosed with adenomyosis (i was diagnosed with endo in 2018) so I’m wonderifn whether anyone else spots during the first half of their cycle like I do. Thanks
Hi 👋🏽! Yes, I do spot between periods at times definitely...spotting and full on bleeding between periods was one of the symptoms that lead me to my Adenomyosis diagnosis. That being said it's not consistent bleeding for me but yes I do experience that at times. Thanks for the question! 💜🎗💛
@@NavigatingEndowithAshley thank you for replying 🙂 I’m trying to get more answers on this.. it’s super frustrating when these symptoms get dismissed by medical professionals..
Anytime! It's beyond frustrating trying to get answers for sure. Not sure if you are on Instagram - if you are, please feel free to reach out anytime (@myendoadenoworld). I have connected with tons of Endometriosis and Adenomyosis warriors - there is a huge online community and I have found it super helpful to connect with others when experiencing new or unexplained symptoms. 💜🎗💛
@@NavigatingEndowithAshley will do. Thanks for the support and all the best on this journey. Hoping that one day there will be a cure for such underrated conditions 🙂
Anytime 🙌🏽🙌🏽
I had bad experience through 6 month when this case started and no any doctor found what i have until one physician finally refer me to Obs & gyne and my first appointment that physician dosent have clue for what iwas going through he was kept saying everyis alright and iwas insisted no im not alright, explained to him what ive gone through but he was busy looking in to computer and writting. Very bad experience and now iwill go my second appointment to know whats my options here because i dont want to lose my uterus 😢
Please ma can I get pregnant after shrinking my adenomyosis with zoladex 3.6mg medications ??? Am 32yrs old,is there any chances for me
Hi Enddy, I am not a medical professional, so I cannot speak to this. Definitely check in with your specialist or gynecologist. I wish you well on your journey 💜🎗💛.
Where can I get the zolatex drug please??? Adeno pain be killing me during periods 🥲🥲
Is Zoladex an injection or tablet ? Was it painful ?
I had a utrus ablation, after 6 years I started to bleed again. He put me on medroxyprogesterone that stopped my bleeding for a month and half now I'm on my 9th day of a lite period with nasty cramps once and a while
Is it normal I'm on my 10th day
Painful adenomyosis results from injuries to uterosacral ligaments caused by injuries in labour, injuries during evacuation of uterus for miscarriage, etc Painless AM i is when your USL are avulsed - needs a GYN to do this - common in China. Pregnancy is complicated. Only effective treatment is hysterectomy.
I agree that these are some of the causes of pain, related to Adenomyosis.
@@NavigatingEndowithAshley I was trying to highlight the distinction between “painless” and “painful” AM. Most OBGYNs have not seen “painless” AM (have to go to China under one-child policy). If we understand the difference then it is more evidence that ectopic endometrium does not cause pain. It is the underlying injuries to nerves - neuropathic pain is VERY VERY bad ! They are caused by straining on the toilet, difficult labors and GYNAE surgery !
The significance of these observations is that painful adenomyosis is progressive - it causes more pain. It will not improve until those uterosacral ligaments are divided - this is usually done at hysterectomy. Clearly that decision needs to be taken in the context of your ambitions for a family, etc
Thank you for following up on my reply as I definitely misread your initial comment. These are great points to highlight, the differences between painful and painless, Adenomyosis 💜🎗💛
Good video - very good description of pain during intercourse, pain during ultrasound and pain during IUCD insertion. Symptoms imply injured nerves within your cervix. Sometimes these result from hormonal induction of labor but can result from other injuries.
How are you doing with your treatment, does its stop your bleeding and spotting between period?
For me it varies. My current treatment as of today's date is that I'm taking Marvelon (birth control) continuously until I have breakthrough bleeding (which usually happens every 3 months - sometimes every month). Once I have breakthrough bleeding for two days straight then I take a break from the birth control to let myself reset. This is all trial and error and the purposes for me is to reduce flare ups and pain. Right now this is working for me for the pain but the spotting still happens and I often have to wear liners. This is definitely not thw answer for everyone as every persons body reacts differently. I hope this answer helps!
I have a adynomiyosis i am liver operation patient my period pain is heavy pain full pls tell me solution
I'm sorry you are going through this. I am not a medical professional, so I can't speak to solutions. However, heavy period pain is not normal - continue to advocate for yourself and speak to your specialist or gynecologist about your pain, push them to keep investigating why you are experiencing pain. It's possible you could have more going on, in addition to your Adenomyosis diagnosis.
Hi, I was diagnosed with adenomyosis. Does anyone bleed during intercourse? I’m very concerned about it. Thank you
I have at times for sure. Adenomyosis can cause abnormal bleeding, such as bleeding between periods and I have had bleeding during or after intercourse many times.
@@NavigatingEndowithAshley thank you so much!
Anytime 💜💛
U have concive
No, I have not conceived as yet...nor have a tried so far.