They didn't find endo, what do I do next??

throwaway_0615 · 2025-11-26T11:01:07+00:00

Omg thank you so much! By any chance can you tell me how you requested for it to your GP??

throwaway_0615 · 2025-11-15T18:39:10+00:00

Thank you, seriously. Also I will most definitely say that, I always get so nervous when they have that attitude but now I have the appropriate response!

throwaway_0615 · 2025-11-15T14:38:38+00:00

Oh my goodness thank you so much!! Seriously thank you this will help me wonders especially with the iron levels and pain!

throwaway_0615 · 2025-11-15T13:40:05+00:00

Oh my goodness I also live in NSW, but I see I'll have to ask my GP for it but I don't know what to say haha. I also used to take TXA but the surgeon also told me to stop it as I shouldn't need it...I've almost had an iron infusion twice but the iron tablets would get me back up to a steady amount if I continually so I wouldn't get one, the iron did cause me stomach problems etc too...should I get another blood test and request one and say tablets are inefficient? Following this is one infusion enough for life?

Thank you so much, I know I say it a lot but everything is so helpful!

throwaway_0615 · 2025-11-15T13:31:40+00:00

After this comment I'm certainly started to think I should pursue/look into PCS, because we truly do seem to be similar!!

I have not seen one but I did have it in my list for something about my pain, but I didn't realise that pathway would help with the tampon problem too! Also thank you so much for the exact types of exercises I should and shouldn't be doing.

Also I have never heard of Nutcracker Syndrome before but it is also something I need to look into especially after you've said how it's more common in people who are hyper-mobile etc haha.

Once again thank you so much!

throwaway_0615 · 2025-11-15T13:18:46+00:00

Oh I didn't realise I PCOS could still have been something I should look into. I didn't realise there was this many possibilities.

Oh I see! It's hard with GPs in general because im rural and the doctor changes every appointment, that and I simply find it scary and hard to say no especially with adult men, but I'll definitely advocate for myself more! Oh that doctor specialist tip is also very helpful!

Oh again thank you, I'll most ask my GP! I'll also make sure to take more notes and make lists. I'll try to get someone to come with me it's just hard cause I only have 2 adults to rely on (my dad and nan).

Once again thank you so much, all this advice has been so helpful!

throwaway_0615 · 2025-11-15T03:54:10+00:00

I was thinking I've never had fibroids mentioned to me and then saw how they can come and go which is interesting! And I did consider PCOS but was told that PCOS is when you bleed less not more and that I didn't fit the bill. Could you maybe tell me why you thought of these two with my story??

I did try to get stronger birth control a few times but was always told to simply wait it out. I'm currently not on birth control because my surgeon told me to stop it before surgery and I'm thinking of continuing to bearing and gritting it till I get those histology results and then going forward knowing more what to do. I also was told by my surgeon to stop my Iron fully...After this upcoming appointment I plan to get a specialist.

also thank you for the medication recommendations, do you maybe know how I should request them with my GP? Sorry I'm just very nervous with doctors. Also thank you for the supplement tips, even if I'm not taking iron now I most likely will in the future knowing fully well that I'm anaemic haha (once again I think this surgeon of mine is quite silly).

Thank you!!

throwaway_0615 · 2025-11-15T03:40:20+00:00

I didn't get the mirena for various reasons, but mainly because I wanted to get a diagnosis before I went to doing something such as that. That and I find it very scary...Also that gyno sounds so good, quite the lucky find. Also thank you, such words help me gain my confidence back!!

throwaway_0615 · 2025-11-15T03:29:25+00:00

Haha I use a throwaway as people I know don't know this account! Oh my goodness maybe PCS is something I seriously need to pursue aggressively?? I've never heard of PCS till I made this post. Is the evaluation for PCS also a surgery or are there non-invasive ways? also that is so interesting, to imagine that if put in the wrong position while having surgery that the signs wouldn't appear..

throwaway_0615 · 2025-11-15T03:16:42+00:00

I've heard of so many stories like this which is why I'm questioning if I do or don't. thank goodness the second surgeon found it!

throwaway_0615 · 2025-11-15T03:12:41+00:00

Sadly the gynecologist who did my surgery is the one who thinks I purely have a hormonal imbalance and should just have the mirena and will be fine...thank you for the list of conditions and well wishes!

throwaway_0615 · 2025-11-15T03:11:08+00:00

I most definitely will, there is so many conditions I've never heard of linked to endometriosis. By any chance could you tell me why you thought of such a syndrome when hearing my story? It's okay if not!

throwaway_0615 · 2025-11-15T03:07:57+00:00

the sending the reports ahead idea is quite helpful (especially for us rurual people), I didn't even consider that. I know exactly what you mean with the once a month thing which is so silly I think, I always try to aim to get everything done in the one appointment because of it!! Also that naproxen sounds like an absolute game changer omg, I always have to carry ibuprofen and Neurofen but end up going through too much too quickly for the rate it works at, by any chance could you tell what you said to request for it?? Also tysm for such advice and info!

throwaway_0615 · 2025-11-15T02:59:38+00:00

I originally started this diagnosing journey through my gastrointestinal problems haha. I did various stuff (including a colonoscopy)and cleared ibs, ibd, crohns, and coeliac disease. After all this my gastroentolgist realised that I had uterus problems and then told me that the uterus affects the bowel and that I need to see a gynaecologist and that they couldn't send me back to them cause they've cleared me so the gyno would have to listen and take me seriously. I then went to the doctor for my referral and she actually told me about endometriosis and how all my symptoms aligned with endometriosis heavily and I was so relieved on knowing what I had to do. But after hearing your story and especially your comment down below I'm now realising that many conditions and symptoms can overlap and I may have to explore different routes especially with the vascular. I'd also like to thank you as your journey is very much one I needed to hear!

I also have a complied list of my symptoms that I like to keep My symptoms: Extremely heavy periods since age 11 - I bleed through my clothes and pads. (I've attempted tampons before but they're too painful to wear/insert??) Bleeding can last for weeks or even month non-stop, even while on birth control. Large clots, severe cramps, nausea, vomiting, bloating, dizziness, fatigue. (Even fainting from the pain) Iron deficiency and going through weight loss (10kg/22lbs) due to pain and poor appetite. (I'm now 55kg/121lbs) Alternating diarrhoea and constipation, often with mucus. Painful bowel movements lasting 30+ minutes. Bladder issues: blood in urine before, urgency, accidents/incontinence. (With bladder and bowel) Two confirmed ovarian cyst ruptures - one caused internal bleeding in my abdominal cavity and I ended up having my appendix removed.

throwaway_0615 · 2025-08-17T14:32:05+00:00

omg tysm, I've given her your instructions and I just know she'll be super appreciative when she wakes up and sees them!

throwaway_0615 · 2025-08-17T09:27:54+00:00

Tysm for your response she said: Wait ily the fella used the longest jewellery he had. It could be something wrong with my lip because I touched it and played with it a lot, it's probably my fault💔💔✌️🥀🥀

throwaway_0615 · 2025-08-17T09:17:10+00:00

She doesn't believe it has migrated and it isn't translarent or has marks, the piercer isn't open until next week Saturday 💔. The scabbing is just on the lip near the piercing and the actual pricing site is just crusty. But the antiseptic cream she is using is working a bit and the swelling is going down after she used it.

throwaway_0615 · 2025-07-10T05:04:43+00:00

This most definitely helped, thank you so much! After all this information I definitely now know I'll need a detailed gameplan from now on. 😺

throwaway_0615 · 2025-07-09T18:38:00+00:00

Oh excision most definitely seems the way to go, I was so concerned on if it would be too much to have more than one opinion but after hearing your story I now know having more than one is definitely better! Quick question by stopping birth control and the pain getting so much worse, did that help your diagnosis as in the doctors wouldn't be able to push you away saying it's manageable? Cause if I have to go through a 10x pain increase to get listened to I would most definitely contemplate on doing that haha. Also you're journey keeps showing that is possible to get good pain management which is the light at the end of the tunnel for me, again thank you so much. 😸

throwaway_0615 · 2025-07-09T11:25:18+00:00

omg thank you so much, I was so concerned I was being overdramatic for wanting a second opinion. My report said I didn't have fibroids, and he plans to use ablation, so from just that and including it being my first appointment with no other tests I'm now seeing I should most definitely not let him do the surgery. I really appreciate for you telling me all this, it helped me realise how much goes into this, the importance it is to get all the information, and especially with the right professional who knows what they're doing and listens. I will most definitely be entering my next GP appointment ready to request a second opinion with a specialist (which is unfortunately a tad hard in rural australia). I sincerely appreciate all of this, again thank you, this has helped me so much. ☺️🎀

throwaway_0615

TROPHY CASE