Endo Specialist or General?

[allyshajohnson]

Endo Specialist or General?

Just wondering…do you you think that somebody that is a “Consultant Obstetrics and Gynaecology and an Advanced laparoscopy ATSM Trainee” who is a part of Senior specialist registrars with an interest in endometriosis is an endo specialist or not….?

Only because that’s what my current gynae is…and I’m thinking of going private in terms of looking for an endo specialist as when my first appointment happened, denied me an MRI for diagnosis…as well and strongly recommended the pill and NSAIDs which I cannot have due to GERD etc….i had to insist after a long weight…I eventually did and they found Adenomyosis. If I didn’t I never would haven’t gotten a diagnosis cause he was reluctant.

During the follow up…he again strongly recommended I take the pill but this time…a combined pill of zoely, femodene, marevelon. Due to my low weight/BMI due to lack of eating caused by constantly flare ups again, I’m not recommended certain hormonal treatment and I cannot have a lapro atm due to the risks. He also said no to IUD…because I was a virgin and it would be difficult to fit/remove and Pelvic Floor Therapy again because I was virgin and not s**** active, despite women doing it for endo/adeno….my GP also said that there is no evidence that it’s useful so she also said no. :/

Also due to my body being fragile, and my mental health not being all that…I’m not sure about the pill as it could pose a risk with my overall health, making things worse than better….ive heard exceptions but still I’ve heard more bad than good. Also my mum, sister, health practitioner for nutrition are all not keen…also with conceptive pill there is a cancer risk apparently so that’s a red flag.

I asked if my MRI could be doubled checked by MDT and he said no….as he didn’t deemed it necessary cause it didn’t show any indication of endo on other organs, despite it being well known that MRI doesn’t always show everything and that people can miss…I stressed it but he dismissed the though…

Unfortunately he said that there is no other alternative other than the combined pill and for me to see him next week.

I asked if he was an endo specialist? Of course he said yes, but I’m not convinced for some reason…I don’t know.

Also my GP doesn’t know what to do with somebody like me that’s dealing with low weight, osteoporosis, ARFID, trauma, neurodivergent….all NHS nutritional/dietitan services that my GP referred me to have turned me down due to my issue being to complex for them…also she doesn’t know what ARFID is nor is she fully understanding of health trauma etc

I dunno….Feel free to give me your thoughts on this?

[Cocoacupid]

hun I have had a lot of Trauma etc I’m also nerodivigent but I’m 38 almost 39 . I used to suffer terribly with my weight I was always under weight . I would avoid foods also because of texture taste etc and how the food would feel in my mouth. When my endo was really severe I couldn’t loose weight very easily . Although before my lap they put me in a medical menopause and I lost weight which was really weird . My weight is more stable now and am more stable in that area . I would say if they have taken a course and specialise in endo and are a senior consultant I would say yes they do know what they are talking about. Not sure how old you are not that that really matters but they shouldn’t have gaslight you that is in un acceptable they also shouldn’t make excuses as you are a virgin that is being discriminative and basically denying you . See if your family can help you by seeing if you can see another specialist in endo . ? Also not sure on part of England you are as they is a group on Facebook called information and guidance in endometriosis and they have lists and things of all the endometriosis specialists there are around . Hope this helps a little . Take good care. Xx

[allyshajohnson in reply to Cocoacupid]

Hi, thanks for your response.

I’m sorry about your weight struggles. Personally I’ve never had issues with losing weight as…I’ve always been on the slim/skinny side so for me it has never been about being overweight me losing weight, rather the opposite….and needing to gain weight, due to been too skinny and underweight. I’ve always been fussy with food and looking back it most likely had to do with neurodiversity….but it never got to the point of ARFID…however after dealing with GERD at 14, my food intake started to become more restricted, until 2020/2021 when I started to endo/Adeno like symptoms which had made me almost stopped eating together due to the constant flare ups and possible contributing food triggers, which have lead to and ongoing cycle of health trauma…added to the trauma of seeing my dad being sick chronically from a young age, during this time it as worse as he was also in and out of hospital. Etc

When you say medical menopause, do you mean the pill or another hormonal treatment or method…the lack of convenient treatments and options are astounding. All are prone to likely long term side effects…with no guarantee of any improvement…

A specialist that taken a course…and specialise in endo and is a senior consultant….

Well….my gynae is a Consultant Gynaecologist aka a “Consultant Obstetrics and Gynaecology” as well as an “Advanced laparoscopy ATSM Trainee” who is also a part a group of “Senior specialist registrars” that have an “interest” in endometriosis….so make that what you will in terms of knowing if he is a endo specialist or not?

Personally….I dunno you tell me…lol

About rejection of IUDs, Pelvic Floor Therapy because of my gynae said No to both of them because I wasn’t sexually active for IUD, it would be difficult to insert and remove and for the PFT that it’s only for those who deal with “painful sex”…that do the therapy….that’s what my gynae has said to me who again happens to be a Consultant Obstetrics and Gynaecology” as well as an “Advanced laparoscopy ATSM Trainee” who is also a part a group of “Senior specialist registrars” that have an “interest” in endometriosis…sorry just had to reiterate.

Also my GP, said that Pelvic Floor Therapy shows no evidence of it being affective despite that. So I guess both my gynae and GP didn’t agree. I’m thinking of changing my GP also after being there since birth. She also doesn’t know what ARFID was and failed to understand why I was struggling to eat and putting on weight despite continuously telling her that it was due to constant cramping/flare ups…at one point she just said: “life happens”…and questioned me if I wanted to live…and that I could die if I don’t take this serious…(when I was.) She only thought to solve the issue not the root of it. She saw it all from a surface level, even my mum didn’t understood what was going on with me and often sided with her so I was on my own with this, still kinda am…she was also against MRI, because she didn’t understand that it was safer than radiation scans..and wanted me to take NSAIDs and hormonal treatments that weren’t ideal for me….i had to insist on my own to get MRI while going back and forth with my mum and gynae and was found to be dealing with Adenomyosis. If I didn’t insist I never would have gotten a diagnosis. My mum means well but she doesn’t understand.

Would you say I was gaslighted by the gynae and GP?

I always thought that I was constantly dismissed but gastlighted not really maybe in the past at times with other chronic health concerns such as GERD, mental health etc….along with the general dismissiveness.

But personally I’m not keen about the coil…especially Mirena as I’ve heard more bad stories than good, neither did my mum benefit from it as it only made her bleeding worse so no. Also the pill apparently has a link to cancer so that’s also a no show. As for pain management, it frustrates me that paracetamol is my only option as due to GERD and history of constipation I cannot take NSAIDs and codeine, co-codeine…or anything that has codeine in it. Tbh I’ve never been prescribed aspirin but whether I’m allergic to it or not…that’s another story.

I’m not on FB…so I would be able to have access unfortunately but you could share the list on here if you like…..

To find somebody else would most likely have to be private, unfortunately due to financial constraints it’s difficult but at this point there might be little options.

The things I wanted my MRI to be checked by a MDT but that never happened as my gynae didn’t deem it necessary despite knowing full well that MRI doesn’t always pick up everything and without an MDT…certain things that are present on the scan can be missed. That’s also another reason I’m wondering if he’s an endo specialist or not and if I should be looking for somebody else or not? Cause the idea is looking for one that is an Endo specialist with a MDT that is willing to check over my MRI to double check to see if there is endo also present as well.

[Cocoacupid in reply to allyshajohnson]

Hey hun it was an injection to turn off my ovaries which I can’t remember the name of. I did go in hospital for my weight around 13 and had my 14 birthday there it was a unit for mental health. It’s closed now though . It was a horrible hospital to be honest I was a lot worse when I came out of the hospital. It was only in my late twenties early thirties I really struggled with my weight being too heavy etc As I said now am more at a stable kind of weight . When I had the pill I would get really bad headaches and wouldn’t help with the pain etc. yes I would suggest they have gaslit you hun. I do have the coil but the first one rejected the second was better now on my third one. I did try the injection but I put on too much weight. I also am limited to what meds I have as I have fibromyalgia and also a lot of allergies to meds especially. I also have GERD but I do take naproxen when the pain is severe . My mental health medications made me put on weight as well. As they kept saying I had a personality disorder when it was autism all along . I am unable to put the list on here as I’m not part of the group anymore as someone upset me . I think you can put the area you live in and put endometriosis specialist in google search engine and it will come up etc. take care xx

[allyshajohnson in reply to Cocoacupid]

Hi, thanks for your response.

I’m sorry about your struggle with weight….all the meds suck, not long ago when I was wrongly sectioned (due to a misunderstanding)….they put me on this medication that really messed me up…before I wasn’t open to taking anti depression for the depression and GAD that I was dealing with…as heard about some unpleasant stuff about the meds and also how if you come off of it straight away you’ll get withdrawal affects. I do not like how you have to slowly reduce the dose in order to come off that doesn’t sit right with me…however I was open to them if it gets to the point that I really need them…and I mean…really need them. The same applies today, but the medication that they put me on against my will was horrendous and didn’t sit right with me…even though it was apparently there lowest dose. That was enough to confirm that mental health medication was a no go the mum the whole time.

About health anxiety, my dad went through a lot of colonscopies, endoscopy and express how not all of them were pleasant…one time when on the way back, he threw up…his tea…in the car…(friends car as he was dropping us off)…either it was the anaesthesia(it’s known to cause nausea/vomiting after) or the tube that irritated his stomach and throat or both….i’d say both….they did put him asleep…went he came out he was drowsy…and drank some tea then later without any warning threw up loud and gave me a anxiety attack. Around this time the GERD and GAD was so bad that it was difficult to swallow and breathe even….and was off school cause I wasn’t well enough to go in…cause I deal with GERD I was already afraid to have a endoscopy, it’s just too extreme for me…till this day it turns out that at some point I might have face my nightmare and go down a similar path like my dad…”sigh” not helpful at all.

Then I dealt with IBS/D symptoms later down the line etc….mostly from stress, then food poisoning in 2017 that I might of not fully recovered from and now suspected endo. (I’m already diagnosed with adeno). The worse thing is the bowel prep, couldn’t do the CT scan because of it, no way I can with a scope. Especially after experiencing diarrhoea episodes…from the constant endo/Adeno flare ups….the time when I dealt with food poisoning, and poisoning from a vitamin B syrup…and dealing with emetophobia from seeing my dad constantly be sick and pass out…(he choked on his vomit once while passing out and it nearly unalived him)….and the constant nausea with GERD. I known in a lot of cases preps can make you sick too….and just mainly because my body is too fragile for strong laxative. I can never take laxatives, just a no no. I don’t know, either people understand or they don’t…cause a lot say…”your being difficult, your rejecting help” and it’s like no…I’m not is just the options for treatments and investigations are limited…and mostly unsafe. I mean it’s likely I’ll need a laparoscopy…heck I don’t want suck a horrendous thing but at point it’s most likely inevitable. :/ …also if the pain continues down the line, I might have to consider hysterectomy as I deal with adeno meaning I would have to forfeit my right to have kids and be barren. :/

I sound like I’m being dramatic but I’m not…I dunno I hope you know what I mean…a lot don’t and it’s caused a lot go friction even fall outs. 😔😖😞 I don’t know anymore…sometiems I feel like I’m the problem, maybe I am I dunno. Tbh.

Dealing with health anxiety, ARFID or ARFID like symptoms, emetophobia etc is often lonely and disenfranchised nobody understands the struggles and the only see you ask being difficult. Both family, friends and medical professionals.

It’s not just food, it’s medication, procedures…it’s anything I avoid if it makes me sick, causes diarrhoea, more pain and trauma in my life to my physical and mental health.

Btw I’m 27. I forgot to put my age. And was diagnosed with ASD at 14/15. But high functioning obvs. Apparently there is link between ASD, nervous system and gut issues…our nervous system functions slightly different….and can make us more prone to gut imbalances etc gut dybiosis as my holistic health practitioner told me. I’m new to this and need to learn more over time but I already knew briefly that there was a link between those that deal with ASD and digestive issues etc.

[Cocoacupid]

bless you hun . I was put on anti depressants and anti psychotics but as I have been on them for so long I now actually need them as I get terrible withdrawal symptoms. Bless you you have been through so much , everything is a worry though especially with anxiety and health anxiety. When we go through things and see others go through the same things it’s hard to not worry. I worry about things too I’m slowly getting to the point where I try to not worry as much but it’s taken a long time to get there . You take care hun and if you need anything you can always message me ok xx

[allyshajohnson in reply to Cocoacupid]

Sounds like a vicious cycle…that’s why I never wanna be on such meds…I’m sorry. I understand with everything that one shouldn’t worry much…but it doesn’t change the fact that the circumstances are so difficult, also again…if nobody understands when you dealing with health anxiety and all of that….also I appreciate you hand of support. ✨

[Cocoacupid]

yes it is worry to have health anxiety I wasn’t saying for you not to worry I ment in my circumstances I don’t try to worry that much now . I think it was due to having sepsis last year after my diagnostic lap as I got cellulitis and then it spread to sepsis but because it was all out of my hands I then had to try to be calm and as I was In the hospital for a week on. Iv meds and oral meds and as my blood pressure got in my boots and as I was so dizzy and felt really weird I just had to let the meds make me better . Sorry if you got the wrong end of stick sorry sweet . Xx

[allyshajohnson in reply to Cocoacupid]

And they say that laparoscopy is just “minimal” basic keyhole surgery…..like seriously?!!! If so then why the heck isn’t it suitable for me as I’m low weight?!! Just because it’s keyhole surgery doesn’t mean it it’s “minimal” the fact that you got sepsis after a diagnosis lapro proved that it ain’t just “minimal”….im sorry that you had to deal with that…I can understand why that would trigger you…sepsis can be dangerous. Also I don’t like how you can get terrible gas pain after a lapro, that’s something I’m worried about especially if it can interfere with GERD as I also deal with being very gassy.

Yeah about getting the wrong still, it got to the point that even people on the spectrum don’t get it either…there was a girl that deals with endo, can’t go into much detail but she went through so much I cannot tell you how bad it was for her….it took a lot of fight…last I heard from her was that she was awaiting for an hysterectomy. She’s my age 27. She’s had this approach for imma take anything that comes at me. I expressed my concerns…and she just took as me being difficult and resistant like the rest of them and said at some point you would have to take the doctors advice or they just won’t bother anymore…not surprising as that’s what they normally do. And that I’m in a better position than most. I mean I didn’t say I wasn’t…I’m aware I’m in a better position than most…and that some are even im a more better position than me, but I would dismiss ove devalue somebody’s pain/suffering just because it’s less than me or more. What might try be nothing to you might be a big deal to somebody else cause everybody is different. Overall along with a few other things it just got heated and she cut me saying that I though her help wasn’t enough…which wasn’t true at all…as she helped me get a diagnosis for adenomyosis. If only she knew. I cried…and cried, I felt like it was my fault, still kinda go. Also my GP who doesn’t understand ARFID, also happens to have a non verbal child on the spectrum, yet still doesn’t understand. But I could be that she doesn’t know how to deal with somebody that’s high functioning I guess….im sorry but from my experiences, not everybody understands, even if they are on the spectrum. :/ you think they do not all of them do.

[allyshajohnson]

Hi, thanks for you response! You said a lot Ngl. It’s not really about avoiding risks and I’m aware that everything has a risk, it’s just in my situation it’s limited options….where for the risks, the cons outweighs the pros in especially in my situation. It’s just all have the potential to promote more damage than not.

[Cocoacupid]

yes hun it is hard that sometimes nerodivgents can have same problem but deal with things differently no worries don’t worry about other people . Sometimes even we can not click with other people I like to think I try and get on with people but mainly stick to my pets . Yes I do have a few friends or so but sometimes just need my space as I often don’t want to be a burden to others . These groups or things can be hard can be helpful or maybe unhelpful I don’t normally do group things as I think people sometimes don’t get what I mean . I really do mean well but things can seem like I sound a bit blunt but am as gentle as they come . Xx

[allyshajohnson in reply to Cocoacupid]

I hear personally I don’t mind one or two more friends….but people exhaust me if I’m being honest….i not understand by anybody and that might be true “sigh”…I do desire a friendship circle….but but at the same time, I like being alone…and having space as well.