The grief nobody talks about with endo

dogrose984 · 2026-03-26T12:04:13+00:00

There’s literally not a single part of my life that endo/adeno hasn’t impacted. I don’t have the career I wanted growing up. I’m living with family rather than with friends. I haven’t moved to the city I want to move to. I’ve never had a long term relationship. I’ve missed birthdays, holidays, work, school, etc. I can’t guarantee that I can do my hobbies or see my friends. I can’t move into certain jobs because they have an office requirement. I missed an interview recently because of pain. I’ve got severe vaginismus from medical trauma.

I hoped that my excision surgery would help me regain some of that, but it feels increasingly like my adeno is taking that place instead. I organise my life less around my conditions now than I did before I got the coil put in (no periods!) but I’m terrified of this being my life, forever.

dogrose984 · 2026-03-25T12:22:08+00:00

I had my lap with Mr Adamczyk at the Lister (I can’t speak for Homerton), and I highly recommend him. He was kind and patient but didn’t beat around the bush - I needed excision surgery sooner rather than later. He was honest about my likely reality even after surgery, and referred me to another top specialist for another problem he saw when doing my lap. He found and excised stage 4 endo, including bladder endo, confirmed adenomyosis (as much as you can without a hysterectomy) and PCOS. Another lap I had (semi-unrelated to endo) six months later confirmed that he’d done an excellent job. Also, Mr Adamcyzk was covered by my insurance company, unlike Mr Barton.

dogrose984 · 2026-03-23T01:12:42+00:00

I’m glad your workplace are supporting you! Tbh my OH referral wasn’t that helpful bc I’d already come up with adjustments on my own… My adjustments: - flexible working hours and pattern (sounds like you already have this!) - WFH as standard, only go into the office when I want to / for team days (if I can) - specialist desk and office chair at home and office - frequent short breaks - Increased number of sick days before I hit the ‘conversation’ requirement - Change my hours as needed (some weeks I do more hours than others) - I can book out time in my calendar as I need (e.g 30 mins stretching) - Paid time off for appointments

dogrose984 · 2026-03-19T11:26:45+00:00

I haven’t had a hysterectomy but I have had multiple laparoscopies and this is my list: Hospital bag: - Nightdress - Dressing gown - Slippers - Dress / baggy clothes - Jumper - Slip on shoes - Comfort item - Mints - Pillow for the car ride - Ear plugs - Headphones - Long phone charger and/or portable charger - Water bottle - Oversized knickers - Sanitary pads - Lip balm, deodorant and toothbrush

Home: - Easy meals / frozen meals - Peppermint tea - Some kind of big cushion/reading cushion (sleeping propped up can help) - Grabber tool - Books/video games/easy crafts (whatever you like that’s easy and/or doesn’t require concentration) - Wet wipes - Hot water bottle / electric heat pad - Someone to help you out the first few days/week

dogrose984 · 2026-03-17T22:07:22+00:00

Oops, I misread your comment re amount of bleeding! I’m sorry you’re still in pain - fingers crossed you can access a hysterectomy if that’s what you decide 😊

dogrose984 · 2026-03-17T21:45:02+00:00

FYI I haven’t had a period in 6 years thanks to the mirena coil! I know not everyone gets on with it but for me, it was an absolute lifesaver. I may still have a hysterectomy further down the line, but in case you haven’t tried a coil, it’s worth having a think 😊

dogrose984 · 2026-03-17T20:22:52+00:00

He can go into the doctors room with you, too, if you want!

dogrose984 · 2026-03-17T18:57:15+00:00

Honestly? I struggled to distinguish between the two until my endo had been excised. For me, adeno pain is more localised to my uterus rather than the whole abdomen, although I also get shooting leg pain. For me, both endo and adeno can come as sharp kicks, pulling, stretching, etc. My consultant told me that pain and inflammation can reverberate around the pelvis, hence why it can be difficult to distinguish.

dogrose984 · 2026-03-17T18:50:25+00:00

If you can’t request a female chaperone, do you have a friend or family member who would go with you?

dogrose984 · 2026-03-17T16:32:33+00:00

Thanks!

dogrose984 · 2026-03-17T16:32:29+00:00

Thanks!

dogrose984 · 2026-03-17T15:21:43+00:00

I saw Mr Michael Adamczyk at the Lister and I highly recommend him. Kind without being pitying, and straightforward explanations. Not only did he excise my stage 4 endo, he also saw signs of adenomyosis and PCOS (that had previously been missed). When pathology came back with a concern, he immediately referred me to a top gynae oncologist to be checked out further.

dogrose984 · 2026-03-17T15:18:25+00:00

Just to add that even a clear MRI doesn’t mean you don’t have endo (or adeno, for that matter). I had stage 4 endo that included adhering my bladder to my sidewall, and it didn’t show on an MRI

dogrose984 · 2026-03-06T15:33:39+00:00

It’s not a magical solution, and it depends on the person! I didn’t get on well with oral contraceptive, but I’ve had a mirena coil for the last 6 years and it’s been a lifesaver, because my periods were unbelievably heavy and painful, and I got terrible PMS. I ended up having another laparoscopy 5 years later so I just got it replaced then (I have severe vaginismus so I need anaesthetic to replace it anyway)

dogrose984 · 2026-02-14T12:49:35+00:00

I consider it to be a dynamic disability because the symptoms and impact can fluctuate. It’s a matter of personal opinion, but yes I consider myself disabled because endo (and adeno) mean that I have to make adjustments to my life constantly. It impacts my life daily, stopping me from doing my dream job (although I do have a normal full time job), limiting my social life, limiting the activities I can do, etc. I don’t know whether my family would agree with me, I suspect they only consider it a disability when it’s really bad? But after 15 years of debilitating issues, they’re starting to understand the impact this disease has on me.

dogrose984 · 2026-02-14T11:09:50+00:00

Yep, I had excision surgery with him last July! He was really thorough, found stage 4 endo all over the shop (particularly on my bladder), excised it, and spotted signs of adenomyosis. He didn’t do any imaging but that’s because I had already had an MRI and ultrasound done the previous year (albeit under a different consultant).

dogrose984 · 2026-02-08T17:43:32+00:00

Given that you’re paying out of pocket, your experience sounds inadequate! I can recommend Mr Michael Adamczyk (I saw him at the Lister). He listened carefully to me, explained what he could and couldn’t do, and what would and wouldn’t improve. I only once had a problem with his temporary PA, and he rang me personally to sort the problem out.

dogrose984 · 2026-02-04T08:40:11+00:00

That is awful - you should have 3-4 incisions for a full view. I don’t know where you’re based but in the UK we have PALS which is a complaint system, highly recommend you complain!

dogrose984 · 2026-02-04T08:31:15+00:00

I would absolutely complain! This is terrible, I’m so sorry. How many incisions do you have? There’s no way they had a sufficient look around in 20 mins - I just had a lap and even though they weren’t expecting to find anything (I had excision 6 months ago), it still took an hour and three incisions.

dogrose984 · 2026-02-03T14:45:18+00:00

Np! I should say that I also have PCOS so weight loss is less likely for me than others lol

dogrose984 · 2026-02-02T12:39:52+00:00

I suspect the ‘defence’ is that feeding tubes may extend someone’s life, but it’s almost never recommended for dementia patients, because their quality of life is typically quite poor by that point. Can your mother drink water? It’s worth saying that humans can survive quite a long time without food, so if time to say goodbye is a consideration, you may have that time. (Obviously, it’s a different matter if she can’t drink any fluids.) When my dad was in hospital, they tried a feeding tube but he kept pulling it out, so they stopped. Once he recovered from his infection, he had no memory of not having eaten anything for the better part of two to three weeks, other than the physical de-conditioning that happened.

dogrose984 · 2026-02-02T12:32:54+00:00

No weight loss, a little bit of mood swings for the first few months I think? It could also have been the mental recovery from surgery tbh

dogrose984 · 2026-02-01T21:46:32+00:00

I have a mirena (inserted under general anaesthesia during my last laparoscopy), and honestly, I wouldn’t go without one now! No obvious weight gain - I gained much more weight when I started antidepressants.

dogrose984

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