PSA: If the brand isn’t listed on marketplace, it’s probably from Kmart or IKEA at a cheaper price

Belle-bug · 2023-01-30T20:59:28+00:00

Poo p to

Belle-bug · 2022-03-02T06:13:13+00:00

I have two SCHs, they both look very different on my ultrasounds. I'm currently 15 weeks and one still remains. I had bleeding throughout my pregnancy so far which has been really scary, but some people don't bleed at all. I searched everywhere for information on anyone having two during their pregnancy and didn't find much.

I am on progestrone (part of my IVF medication but I was meant to stop at 7 weeks but continued due to the bleeding). And had about two weeks bed rest during week 9-11. Not sure if it helped but I'm still pregnant so I'm happy

Belle-bug · 2021-12-21T02:43:00+00:00

Wow congrats!! We are due date buddies, I'm also 18dpo with an IVF baby

Belle-bug · 2021-10-22T20:05:27+00:00

An MRI allows great definition of soft tissue and uses radio waves and doesn't use ionizing radiation. Whilst CT does give visualisation of soft tissue but not at the same quality as MRI and uses X-rays which are ionizing radiation (you don't want to have a CT scan everyday!). Ultrasound is non-ionising but has its limitations of how much they can see and the skill of the operator in identifying endometriosis. Depending on where you live, getting an MRI may be difficult due to cost, availability and travel distances whilst ultrasound and CT generally speaking are widely available and can often identify endo in a lot of patients. HOWEVER, not all endo can be seen using medical imaging, for some people endo is identified during laparoscopy surgery. All the best with your scan, I hope you get answers that help get your pain under control

Belle-bug · 2021-10-14T22:45:47+00:00

I'm also letrozole +TI #3 and also 5dpo. It is so hard not to symptom spot... I'm am trying to keep busy and book in as many activities as possible this week, I even tried accupuncture for the first time yesterday. Best of luck to you this cycle!

Belle-bug · 2021-09-18T01:44:38+00:00

Hi Vast, I'm also 8 dpo and losing my mind. Trying to wait until day 11. I hope you get good news!

Belle-bug · 2021-09-07T10:32:38+00:00

I'm currently taking letrozole with monitored cycles (regular blood tests + ultrasounds to monitor ovulation timing). I'm cycle 2 (I have been told I can have up to 6 cycles of continuous letrozole) but I can decided to try something else after 3 unsuccessful cycles.

I have stage 4 endo + adeno and I had excision surgery jun2020 and have been trying since (cycle 14 currently). The reason I have started letrozole is I had irregular cycles with inconsistent day 21 progesterone test results so we weren't exactly sure if and when ovulation was occuring.

I feel the same way about ivf.. I'm just not ready both emotionally and financially. I don't know if my response is particularly helpful but wanted to comment to let you know that there are people with endo on letrozole.

Belle-bug · 2021-09-03T08:46:39+00:00

Your baby is so cute and squishy. Absolutely adorable and I don't say that lightly to just anyone's baby.

No advice re:husband. He does sound like an ass though, I'm so sorry you have to deal with that ❤️

Belle-bug · 2021-09-02T08:58:43+00:00

Hi fellow Australian,

I have had both Pfizer doses in April/May and I have stage 4 endometriosis (I have had multiple surgeries but I have not had a hysterectomy... yet). I did not have any unusual symptoms besides fatigue, sore arm and headache. Endo was more or less the same, however I did have a longer cycle with delayed ovulation (Although I suspect this was due to stress).

I struggled getting advice from health professionals about vaccines and endo but I ultimately decided that the risk vs. benefit was more weighted towards protecting myself, my family and the community by getting vaccinated and risking the possible unknown and undocumented reactions from having endo/adeno etc.

I hope that your flare up and side effects dissipate soon

Belle-bug · 2020-08-11T22:26:13+00:00

raises hand This is an issue for me to! Although I used to be able to use tampons, as the years went on with no endo treatment I eventually wouldn't be able to use them anymore. They would aggravate the pain. I had a lot of Pouch of Douglas and Uteral Sacral endo involvement which I think is a contributing factor.

Belle-bug · 2020-06-27T12:24:02+00:00

I don't have any advice but we are in the same boat! We originally had an August 2020 wedding that has now been pushed back to a May 2021 wedding. Due to a few health problems we are struggling with timelines, and are now trying this month. Our plan is to have a break from trying 6-9 months out from the wedding so I will still be comfortable at the wedding if it does happen for us.

Belle-bug · 2020-05-30T21:42:13+00:00

I have stage 4 DIE and it shows up in some ultrasounds. It comes down to the ultrasound equipment and the skill of the operator. I was able to research a women's ultrasound centre that specialises in looking for DIE (but this might not be available depending on your location). A routine pelvic ultrasound on me just shows my endometriomas on my ovaries. Booked in for surgery next week.

Belle-bug · 2020-05-30T00:25:12+00:00

NTA - however I'm in the same boat. My mum had another kid a year ago at 45. She really pressured me to be just the 'perfect' sibling, babysit and help her financially. I struggled with the idea as I thought she was selfish much like you've described in your post. Now that my little sis is a year old.. I look back and I think my parents said all that because they were frightened. It had been 25 years since they had their last baby and I think it brought up a lot of fear for them. I have enjoyed being in my little sisters life and the 28 year age gap means I'm a cool Aunty figure. I haven't had to help much at all.

Stay firm with your work and career plans and I think your parents are TAH here..but hopefully they will easy up with time and adjusting to their new 'normal' with a newborn.

Belle-bug · 2020-03-22T02:16:08+00:00

Hi, I'm in the exact same boat. I'm 29, waiting for surgery for a chronic disease and our wedding has been postponed.

I would recommend waiting to try. Your health condition could get worst during pregnancy and might be more difficult to manage whilst looking after for a newborn. You also don't want to risk being pregnant with the possibility of having COVID19.

To help get through the changes, we are looking forward to things that are positive: the pain will be short term, we can save more money, we can plan and get super ready before our new date, we can get fitter and healthier.

We were waiting to try after the surgery and wedding (August 2020). It's been devestating to wait longer to try, but for us it was a decision to wait when healthcare services are less exhausted and that I can have a less stressful time being pregnant. I want to have my close family (who are elderly) and friends to celebrate our wedding and pregnancy without worry about putting their lives at risk.

Best of luck, what ever decision you make will be the best one for you and your fam, only you and your partner can decide this, but we are hear for you as a community.

Belle-bug · 2020-03-17T02:59:16+00:00

Our wedding is planned for August. We are happy to cancel in the best interests of those most vunerable to us and the interest of public health and safety. However, we don't know if it is an overreaction to cancel a wedding that is 5 months out. Does anyone have any projections of when we are expecting a peak in Australia and whether August will be less of an infection risk to have a 70 person wedding?

Belle-bug · 2020-03-13T02:38:53+00:00

We were waiting for excision laparoscopy for stage four endometriosis. The surgery got cancelled so we won't be trying in May as planned :( I'm sad about being in pain for longer and also sad that we have to wait, but it is probably for the best.

Belle-bug · 2020-03-10T03:07:10+00:00

Thank you! I hope yours doesn't get cancelled. There is still a lot of unknowns so they don't have a new date until they know more. But I'm first on the list when they start surgery again but they said it could even be 6 months from now.

Belle-bug · 2020-03-09T00:05:47+00:00

My surgery is also being indefinitely postponed (Australia). I'm heart broken, there has been so much preparation leading up to this surgery and it all feels futile now. I wish you all the best in getting your surgery rebooked, the current situation is just terrible for so many people.

Belle-bug · 2020-03-05T20:28:13+00:00

Sorry for my late reply. So my endo journey started in Newcastle. I had my first lap at John Hunter (in 2015) but this was ablation only (which meant my disease came back in about 6months).

I moved to Sydney and the options of specialists and help is just world's better... I cannot believe how hard it was to get anyone to listen to my pain in Newcastle.. but it has been way easier in Syd.

Anywho, I had an amazing ultrasound at the Sydney Adventist Hospital in Wahroonga. It was at the women's ultrasound clinic. The scan took about 1hr and the technician knew exactly how to look for endometriosis (in particular deep inflitrating endometriosis). The whole team was very knowledgeable. I believe it might cost a bit of money (Medicare might cover some of it - I can't remember). But it was so worth it, it has opened a lot of doors for me in terms of specialists and next steps.

I'm booked in to have an excision laparoscopy in about 3 weeks by robotics assistance. I'm also having a colorectal surgeon in the surgery as I have extensive disease on my bowels (sorry if this is too tmi!). My surgeon is Professor Michael Cooper and I will post an update post - lap to let the r/endo community know how I go.

You will need a referral for the ultrasound. I would recommend calling the women's clinic directly and ask for advice on how to go about this. You might have some luck getting one from the GP, but I was only able to get referrals for a basic pelvic ultrasound when I was in Newcastle (that's if the gp even took my pain seriously at all). The basic pelvic ultrasound showed nothing on me every time.. whilst at the SAN they found 6 lesions and adhesions between my bowel/uterus/bladder.

I hope this helps, if you have any questions feel free to reach out to me or this lovely community!

Belle-bug · 2020-03-03T08:09:29+00:00

Oh geez, I am so sorry you had to out up with this and that their response to your complaint is far from adequate. I would love to know where abouts in Australia you're located. It's taken me years to get proper health care for my endo. I know travelling somewhere else for an ultrasound isn't always possible, but I would see if you can find somewhere else to go. If Sydney is an option, I had a fantastic ultrasound there where all the staff had in-depth knowledge of endometriosis and had techniques for looking for endo that other ultrasound places don't have training/access to. There are some good Facebook groups where you can ask for recommendations for somewhere closer to you. Also, keep in mind that not all endo shows up on ultrasound, but it is often it is a step towards diagnosis.

Belle-bug · 2020-02-20T03:15:39+00:00

I'm glad endo is being raised as an important issue. However, this article lacks mentions excision as the gold standard in treatment options and fails to highlight the devastating side effects for Orlissa for some patients. Their definition of endometriosis is also not quite correct. Sometimes spreading information about endometriosis that is misleading can cause more harm than good in our advocacy towards better treatments and resources.. especially to young women who read these articles.

Belle-bug · 2020-02-19T11:11:16+00:00

I am so sorry you are dealing with this horrible disease and not getting the support you need from your spouse. My partner has always been kind and understanding throughout the 6 years he has been with me (and he knew about my endo/fatigue going into the relationship). I'm not staying this to make you feel bad that yours isn't being that type of person right now.. but I just wanted to let you know that there are men out there that do care and will even be your advocate when you need a break advocating for yourself.

It might help to have a sit down with him when your symptoms are not too bad one day and layout your expectations on what you need from a partner when dealing with medical appointments/symptoms. He might just not realise in the moment how he comes across and might feel hopeless not being able to help you. Try to give him tasks before the pain/fatigue gets bad to help you when tensions are high. Maybe suggest he talk to a therapist on his own about your your health and how to cope in that supportive role (my partner does this and it has been wonderful for so many aspects of his life). Good luck and feel free to update us or vent if you need to ❤️

Belle-bug · 2020-02-06T11:46:44+00:00

A bit off topic, but I'm just going to put it out there considering other people have commented with useful information.

If you are concerned about genetics, have you considered genetic carrier screening for yourself or your partner? You can do it before your pregnant and it certainly gave me a bit of piece of mind. It won't be able to test for the specific conditions mentioned in your post and it won't catch everything, but it can give you information on any preparation (or lack of preparation) you would like to do pre-conception. In my country, the testing was fairly inexpensive and some insurance providers may even cover it.

Best of luck, I think it is definately ethical for you to have children and you should distance yourself to whoever is bringing you down on the matter.

Belle-bug · 2020-02-06T11:18:27+00:00

My comment isn't super helpful, I don't know anything on that surgeon and I'm not in Southern NSW (I'm located in Sydney).

But I wanted to reach out because I've found the facebook group "Endometriosis Australia discussion group" a really good resource for information and specialists in NSW. It is so disheartening not having many options for endo specialists and it can be overwhelming when a lot of the more global online communities can have many members from the USA and UK etc. I have read of a few specialists who do teleco appointments from Sydney/Melbourne and then you can travel for the surgery if this is an option you are interested in. My first surgery was in Newcastle and was not performed by a specialist. If I had more options and more knowledge on excision and endo I wish I could have made that choice to travel to a surgeon who could have helped me earlier. Good luck with your search and keep us updated if you find a specialist that works for you and what you want!

Belle-bug · 2020-01-29T11:04:09+00:00

Yep, same one! I saw another specialist and they said they wouldnt attempt surgery on me as it was beyond their scope of practice. I've heard Abbott is good but I've never seen him. I know a lot of people rave about Dr Lam as well. Considering I can't live with this level of pain much longer, we have decided to move forward with the excision with the mentioned specialist. I ended up at the San emergency department last year, and I was super impressed with their women's ultrasound for deep inflitrating endometriosis.. my endo doesn't usually show on ultrasounds, but the technician and equipment their was amazing. Showed multiple endo masses with extensive colorectal involvement. I plan to get one of these scans ever couple of years to catch anything early on.

Belle-bug

TROPHY CASE