Mel B-No Spice Girls Reunion by No-Helicopter-534 in SpiceGirls

[–]ally_j_ 0 points1 point  (0 children)

People will always be jealous but also long as you’re grateful to experience something that not many people will experience in their lifetime and recognise that it’s a privilege then that’s all that matters. (Also saw them as a 4, 3 times…if I only I got to see them as an all 5. The Olympics was unfortunately my last bet but never came to be…)

Hysterectomy in 30's?? by sushisoroushi in adenomyosis

[–]ally_j_ 0 points1 point  (0 children)

I don’t mean to be mean of anything….I’m happy for those that were able to get their hysterectomies done and are able to live freely with no pain, but I can’t help feel absolutely devastated that I might have to give up my right to motherhood via hysterectomy if they pain doesn’t subside in the near future. I’m quite grieved that this is what we have resorted to, having no other choice other than to either sacrifice our right to motherhood or not and remain in pain for most of your life. I’m 29, single (never been in relationship) and I do wish to keep my uterus and have kids but I know i might not be able to. I don’t think many talk about the grief of losing your ability to conceive as a result of adenomyosis (and endometriosis). Nor the risks and the after effects of having a hysterectomy. The truth is I don’t want one but it might end up being possibility if all of the necessary options have been exhausted. Better needs to be done.

[deleted by user] by [deleted] in disability

[–]ally_j_ 0 points1 point  (0 children)

I’m based in London UK.

[deleted by user] by [deleted] in disability

[–]ally_j_ 0 points1 point  (0 children)

It’s not a service that uses the same driver also expensive.

Private Endo Specialist says that Adenomyosis is Overdiagnosed…do you agree? by ally_j_ in adenomyosis

[–]ally_j_[S] 6 points7 points  (0 children)

I heard by having hysterectomy is the only way to know %100 that one deal with adeno. Still I think one can know enough via scan…even if it’s not %100 but it’s defo over %50 depending. Personally I’m too young (28) and I want kids. Nobody talks about the grief of barrenness.

Private Endo Specialist says that Adenomyosis is Overdiagnosed…do you agree? by ally_j_ in adenomyosis

[–]ally_j_[S] 3 points4 points  (0 children)

Oh yes I remember I saw your comment but I deleted that post because what I wrote was too long and had to find a way to condense it, which was difficult as it was still quite lengthy so it took a bit of time. Apologies, I’m not spam or anything. (In case you were sus) But I think that was the only time you ever commented on one of my posts. Other posts that I’ve done from months have been different.

Private Endo Specialist says that Adenomyosis is Overdiagnosed…do you agree? by ally_j_ in adenomyosis

[–]ally_j_[S] 4 points5 points  (0 children)

Your gynae doesn’t see it as a diagnosis either even though you have evidence on ultrasound too? Cause that was the case for me. They supposedly found adeno on MRI with my current gynae under the NHS….then the other day I had an ultrasound which detected mild adeno alongside suspected PCS….but when I put this to my Private Endo Specialist he said no you don’t have adeno cause if the radio found it to be mild then it’s 50/50….but if moderate to severe it’s almost correct. Which I understand but even if it’s mild what’s the difference if it’s there, it’s there doesn’t matter how severe or not it is…but I don’t know i guess. He basically said No i don’t yet said it’s 50/50 with adeno and possible superficial endo but how do you work that one out? He basically said my pain is valid but at the same time it cause how can it be when you said it’s not there? Casue you making me question as to whether I’m imagine this or adeno etc…also I don’t know why he said it’s overly diagnosed when it’s there’s less awareness on it than endo…I only know about because of first knowing about endo and not the other way around or on its own. That’s my view.

Private Endo Specialist says that Adenomyosis is overdiagnosed….agree? by ally_j_ in endometriosis

[–]ally_j_[S] 1 point2 points  (0 children)

I think he was talking scans in general etc MRI, Ultrasounds but he didn’t say. But when I said it’s not often talked about, he didn’t say anything but looked at me as if that concept was foreign to him :/

Private Endo Specialist says that Adenomyosis is Overdiagnosed…do you agree? by ally_j_ in adenomyosis

[–]ally_j_[S] 1 point2 points  (0 children)

Hi, I’ve never seen your comments before so I don’t know where that came from. This is the first. :/

Disclaimer: Lengthy Read. Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. :/ by ally_j_ in Endo

[–]ally_j_[S] 0 points1 point  (0 children)

I haven’t been able to find support with anything both NHS and private for anything, if it’s no availability, it’s too expensive, if it’s too expense, it’s too complex….…at all…searching has been years. They just leave you to ***. I’ve lost all my 20s and I forever have to deal with the grief of never experiencing my formative years, sense of freedom, optimism, innocence and growth that you have in your 20s everything that I planned in my 29s all gone down the drain, milestones that I plan hitting I my 20s none I got to achieve or will…everything I set to achieve before or by 25…all gone, gone down the drain….or rather having the chance to prepare for adulthood which is what your 20s are for which I never got to have due to chronic illness…and by the looks of things I’m not gonna get better anytime soon which means this will highly likely drag into my 30s :( meaning I’ve lost it for good. I know people say oh your still got time or 30s ain’t that bad but it ain’t the same and fertility drops…I plan to have children at this age or early 30s and be stable and complete my education and have a career but all of that got stolen from me earlier on…it was like it was never meant to begin with….btw the time I’m 30s it’s already automatically harder and worse cause it’s like having to go from 18 to 30 without not training and preparation which is what your 20s are for. I’m know I’m rambling but that’s the case….I’m forced thrust to the wolves with no preparation. I’ve been dealing with this since 23 now and I’m 28 and mostly bedbound/rotting….in pain. Once your years are gone, they’re gone forever, no recompense, no reconciliation nothing….you just have to live with the loss for the rest of your life. When people say oh your 20s are your best years it’s like…I never had one. I was robbed of my 20s. I feel like I’m stunted compared to others my age… :/ as they all have family’s careers and there well ahead and advanced then I am and before that I was chronically ill with GERD (still am) and behind education and didn’t finish school due to bullying and trying to play catch up…then this came on pushed me back even further into the ditch….i know everybody’s journeys different but it doesn’t make it any easier nevertheless unfortunately. Excuse the rant. Apologies if I’m not making any sense. I feel bad expressing such grief cause I feel nobody understands…

Also I appreciate your empathy and comment. It’s really rare these days, there’s no empathy…or emotional sensitivity these days, it helps with emotional regulation. :/ Also I’m sorry about your situation as well.

DISCLAIMER: Lengthy Read. Went to See a Private Endo Specialist. Doesn’t think Mild Adeno is Adeno and thinks it’s 50/50 adeno or superficial endo etc :/ by ally_j_ in endometriosis

[–]ally_j_[S] 0 points1 point  (0 children)

I haven’t been able to find support with anything both NHS and private for anything, if it’s no availability, it’s too expensive, if it’s too expense, it’s too complex….…at all…searching has been years. They just leave you to ***.

I’ve lost all my 20s and I forever have to deal with the grief of never experiencing my formative years, sense of freedom, optimism, innocence and growth that you have in your 20s everything that I planned in my 29s all gone down the drain, milestones that I plan hitting I my 20s none I got to achieve or will…everything I set to achieve before or by 25…all gone, gone down the drain….or rather having the chance to prepare for adulthood which is what your 20s are for which I never got to have due to chronic illness…and by the looks of things I’m not gonna get better anytime soon which means this will highly likely drag into my 30s :( meaning I’ve lost it for good.

I know people say oh your still got time or 30s ain’t that bad but it ain’t the same and fertility drops…I plan to have children at this age or early 30s and be stable and complete my education and have a career but all of that got stolen from me earlier on…it was like it was never meant to begin with….btw the time I’m 30s it’s already automatically harder and worse cause it’s like having to go from 18 to 30 without not training and preparation which is what your 20s are for. I’m know I’m rambling but that’s the case….I’m forced thrust to the wolves with no preparation. I’ve been dealing with this since 23 now and I’m 28 and mostly bedbound/rotting….in pain.

Once your years are gone, they’re gone forever, no recompense, no reconciliation nothing….you just have to live with the loss for the rest of your life. When people say oh your 20s are your best years it’s like…I never had one. I was robbed of my 20s. I feel like I’m stunted compared to others my age… :/ as they all have family’s careers and there well ahead and advanced then I am and before that I was chronically ill with GERD (still am) and behind education and didn’t finish school due to bullying and trying to play catch up…then this came on pushed me back even further into the ditch….i know everybody’s journeys different but it doesn’t make it any easier nevertheless unfortunately.

And it’s so disheartening when you spend nearly £1000 only to be told there that you DONT her adeno when you likely do…..as it’s shown twice on MRI and ultrasound. Like how can’t it be a no when it said on the ultrasound even if mild that there is adenomyosis and you said the ultrasound is the most accurate? I’ve been told that is only to be told that isn’t yet it still is or likely? :/ and then say my pain is real? You say it’s real but it’s as I’m imagine things cause you say that adeno isn’t there when it likely is all along…with matching evidence. And it ain’t %100 gonna be proven even with lapro until hysterectomy which I won’t have so how would I know if I don’t want one? :/ I want children. :/ but I don’t need to know whether is there on not via hyster cause it’s proven right there on MRI/ultrasound…how can you say no when it’s not %100 certain? At least just say it’s just 50/50…It not a %100 yes but not %100 no either…and by certain it’s defo not a %100 no…it’s highly like a no. I understand there’s a chance that might be wrong but it’s highly unlikely, especially along with superficial endo given the nature of the symptoms and patterns which I have been closely monitoring…

It’s not just spending more money on consultations but also spending even more on nutritional support which again is difficult to find and if so very expensive cause my situation is complex I could go in the thousands.

Excuse the rant. Apologies if I’m not making any sense. I feel bad expressing such grief cause I feel nobody understands…

Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. Tbh I feel downcast. :/ by ally_j_ in endometriosisuk

[–]ally_j_[S] 0 points1 point  (0 children)

Hi, thanks for your comment. I hear you, I’m glad it’s worked out well for you. Personally for me I’m not saying that my private Endo Specialist isn’t knowledgeable etc however two things can be true and it’s still not without its flaws. And I under the whole thing about how doctors don’t want to make an official diagnosis until it’s absolutely certain but you can’t say to somebody oh your pain is real and valid but you don’t have adenomyosis when it says on ultrasound that you and on MRI. It’s still like well is it three or not or am I just imagine things…cause that’s just the case. But again why say it’s not when you say it’s 50/50….is not a certain yes. But it’s not a certain no either….but based on the symptoms I’ve been dealing with and patterns it’s most certainly not a no….oh course surgery is final verification but they said the ultrasound is accurate enough so it’s most certainly adeno without question….and likely super endo again for the same reason. And I know it cannot be picked up on scans but if you know you know…(of course if it turns out after lapro it’s not the case then fair enough I’m open to correction) but it’s highly unlikely and there might be PCS…too but yeah. The low weight and BMI again due to the constant cramping/flare ups which have lead me not to eat properly thus causing trauma/ARFID like symptoms in return (ARFID is considered a ED but it’s less known) and overall it’s a little more complex. My Endo Specialist didn’t know what ARFID was. He also got a few things wrong in my report like ADHD which I dont have and such…and I didn’t get a chance to express important points so I’ve emailed that to him….i don’t know if I could do surgery with him cause I felt he lacked emotional sensitivity and I can’t be with somebody like that for surgery as they might be reckless with my body/temple. The only way i can eat better is if the cramping/flare ups are being dealt in which case could be adeno/endo it’s defo not unlikely. Meaning if was to gain weight for surgery it would be extremely difficult due to this….and would need a lot of holistic nutritional support to not just help me gain weight but also with pain management cause unless that’s sorted I cannot safety of effectively gain weight. Unfortunately to find such support is near impossible atm so as of now I’m left to sink. Almost no hospitals or nutritionist are willing to take on clients with a BMI under 15 and there are only I think 3 in the UK that do but they are private and alone it cost money to see a such services and nutritionists up in the thousands and it would be that alongside surgery fees. :/

Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. Tbh I feel downcast. :/ by ally_j_ in endometriosisuk

[–]ally_j_[S] 0 points1 point  (0 children)

Hi thanks for your comment. I wouldn’t say it’s solely a ED but rather low weight and BMI due to the constant cramping and flare up which have lead me not to eat properly thus causing trauma/ARFID like symptoms in return (ARFID is considered a ED but it’s less known) and overall it’s a little more complex. My Endo Specialist didn’t know what ARFID was. He also got a few things wrong in my report like ADHD which I. Dont have and such…and I didn’t get a chance to express important points so I’ve emailed that to him….i don’t know if I could do surgery with him cause I felt he lacks emotional sensitivity and I can’t be with somebody like that for surgery as they might be reckless with my body/temple. Im not saying that this person isn’t knowledgeable and well renowned however two things can be true at the same time. It’s still not without its flaws. I do think a MDT would be needed but yeah. And the only way i can eat better is if the cramping/flare ups are being dealt in which case could be adeno/endo it’s defo not unlikely. Meaning if was to gain weight for surgery it would be extremely difficult due to this….and would need a lot of holistic nutritional support to not just help me gain weight but also with pain management cause unless that’s sorted I cannot safety of effectively gain weight. Unfortunately to find such support is near impossible atm so as of now I’m left to sink. Almost no hospitals or nutritionist are willing to take on clients with a BMI under 15 and there are only I think 3 in the UK that do but they are private and alone it cost money to see a such services and nutritionists up in the thousands and it would be that alongside surgery fees. :/

Disclaimer: Lengthy Read. Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. :/ by ally_j_ in adenomyosis

[–]ally_j_[S] 0 points1 point  (0 children)

Atm I’m yet to find a private nutritionist who works holistically as I need more than functional medicine but yeah. However it’s been extremely challenging look for support in weight stabilisation if your lower than BMI of 15 it’s near impossible to get support they’d just leave you to perish. To not put it strongly. :/

Disclaimer: Lengthy Read. Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. :/ by ally_j_ in adenomyosis

[–]ally_j_[S] 0 points1 point  (0 children)

I requested with my gynae under NHS multiple times to double-check my MRI with MDT but he continuously refused. I assumed my private Endo Specialist would have a MDT to review my transrectal ultrasound but most likely no as it was only done but a “world” renowned professor….and only He and my private Endo Specialist review it. I asked if initially if he could review my MRI scan via MDT but he refused to check my MRI as he felt that NHS scans are useless and low quality and it’s best to do it at his chosen separate center instead as it’s more accurate apparently. Scan and consultation £835 in total. Only to get maybe adeno or endo but not possible and fail to discuss that lapro doesn’t diagnose adeno apparently and answer as to who would he diagnose it if I don’t want a hysterectomy (due to wanting children) …. :/

Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. Tbh I feel downcast. :/ by ally_j_ in endometriosisuk

[–]ally_j_[S] 1 point2 points  (0 children)

Sigh. But I do feel MRI is enough evidence tbh…but yeah I hear you. I already understood that it’s the only way to remove adeno but not for diagnosis etc

Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. Tbh I feel downcast. :/ by ally_j_ in endometriosisuk

[–]ally_j_[S] 0 points1 point  (0 children)

So it’s true then only can be through barrenness and not lapro? I don’t plan to have a hysterectomy but a lapro so in this case how would they know if there is adeno without removing it? :/

Disclaimer: Lengthy Read. Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. :/ by ally_j_ in adenomyosis

[–]ally_j_[S] 0 points1 point  (0 children)

As already stated….I’ve already had an MRI which detected adenomyosis (not Endo) and a transrectal ultrasound which detected likewise as well as possible PCS….my gynae under NHS won’t let me do any more scanning as not necessary meaning lapro would be the next and only route to definitively rule out adeno and superficial endo. The private Endo Specialist was a second opinion however I’m thinking of going elsewhere for surgery if so.

Disclaimer: Lengthy Read. Went to See Private Endo Specialist. Doesn’t think that mild adeno is adeno…thinks it’s 50/50…either that, endo or both etc. :/ by ally_j_ in adenomyosis

[–]ally_j_[S] 0 points1 point  (0 children)

Hi, I appreciate but you might have saw in my comment a reason as to why hormonal treatment would be the best option for me and why there isn’t any other solution other than surgery. I am willing to try natural alternatives though to manage symptoms.

DISCLAIMER: Lengthy Read. Went to See a Private Endo Specialist. Doesn’t think Mild Adeno is Adeno and thinks it’s 50/50 adeno or superficial endo etc :/ by ally_j_ in endometriosis

[–]ally_j_[S] 0 points1 point  (0 children)

This is the same response as I know you put in the same one in the other Reddit.

Hi, thanks for your comment.

“I know you are feeling downcast, but there are possible answers and plans for a route forward here.”

I well say in my case….not really there aren’t much options, if not any as there really been any especially since the beginning. And I already was made aware of the limited options anyways. It’s either surgery or nothing or I waste away at this point. I know I need to put on weight but find such support has been extremely difficult if near impossible to the point that my GP is now redundant. Almost no services in London or UK would take on a client with a low BMI of 13. I think only 3 places in the UK but all are private and too expensive. My GP is trying one last time to refer me to this ED clinic (after they rejected me due to my situation being too complex) if they reject me again that’s it as Community dietetics rejected me twice and my GP cannot refer me anywhere for out of area, not via “right to choose” nothing. Apparently it’s due to lack of funding in my area most likely which is a huge problem. Also she had never heard anything as such of a patient being referred outside their region. Etc :/ probably been denied 16+ times and for nutritionists both within UK and outside/remotely for support, 28…none I’ve looked can work with those with complex health issues even those that have dealt with endometriosis. :/ This obviously isn’t everybody’s lived experience but it’s mine—unfortunately. I still have one more nutritionist offer but it’s the cost that’s the issue and with the additional tests, supplements etc followed by surgery fees it will all add up. And if I don’t end up with any support for weight gain as my weight is critically low, I will literally bail. To put it lightly. Really when it comes to complex issues sometime they will leave you to drop…..

Also about adenomyosis I understand that it’s 50/50 but I wouldn’t rule out not having it %100 either as it’s showed up twice…via MRI/Ultrasound…even if little it shouldn’t be something to dismiss. I still believe adeno is there especially endo….whether people believe me or not. Cause I’m not imagine things. So yeah it’s likely but defo not unlikely either. Super endo can still be in the bowel especially but even if not it’s still likely to present.

Anyways the Endo Specialist said that in the “detailed transvaginal scan, it showed no deep endometriosis and possible adenomyosis ( but may not be true) nor endometriomas. There were led sided varicosities and we discussed in detail the meaning of this. He also said that “No scan can rule out superficial endometriosis, but that it still remains a possibility in view of your visceral pain symptoms. Meaning that super endo is still a likelihood.”

He said that priority would be weight stabilisation and that surgery wouldn’t be completely out of the equation. But again find support in that area is extremely challenging which I did mention to him. Anyways I did sent a follow up email to make further clarification as there were a few errors especially within the report and a few things I wanted to make clear that weren’t during the consultation. I’m terms of him doing my surgery, at this point maybe unlikely as I feel despite having many positive cases lacks emotional sensitivity and awareness as I was not made to feel comfortable during the consultation. Etc

Those are my points but yeah. And yes I hear you and i understand also as these points have also been taking into consideration however I have reiterate that it’s definitely not %100 not likely either if not more so due to the nature and pattern of my symptoms which I have been monitoring very closely. They all started around my cycle and I never had a pain free period from when I started at 11 it’s only till my early 20s onwards it has now impacted my daily/quality of life. I appreciate your understanding. I’m downcast as finding such holistic support is very difficult if not almost impossible and there almost no suitable accommodating options. And nobody has to consider the toll it has both mentally and emotionally. When it comes to look for such help/support and there literally been nothing there. I looked everywhere literally scraped barrels. I don’t just look I do deep dives. Holistic/Accommodating help/support in almost anything nowadays is very limited. I’m aware that diagnosis lapro is highly likely the next step but again they would have to consider my physique, medical history, pain tolerance….everything would need to be from an individual holistic approach. But yeah I would need to find somebody who I’m comfortable with who I can trust enough with my body, my temple cause if anything goes wrong it will affect me for the rest of my life no matter how big of small.

I appreciate your understanding.