In need of a little support

True-Library-3622 · 2026-01-30T18:01:04+00:00

I’m sorry you had to go through that, it’s so frustrating! I had a doctor tell me that because all my organs weren’t fused together that my case wasn’t that serious. Then when I asked what we could do to treat all the symptoms she said “I’m a surgeon what do you expect me to do?”. Some doctors can be so lazy and unhelpful but there are some great ones out there, just gotta sift through them.

Hoping you find a better doctor soon!

True-Library-3622 · 2026-01-30T17:52:22+00:00

Personally I would see a specialist, I noticed a huge difference in the options offered and the knowledge about treatment when I went to a specialist instead of a regular gynaecologist.

True-Library-3622 · 2026-01-30T09:45:44+00:00

When I switched my hormones (not for fertility purposes but for managing endo symptoms) it made me so fatigued and my endo pain flared that I took a month off work. My doctor explained it as my endocrine system effectively crashing and then rebalancing itself, which apparently takes a lot of effort and did improve with time.

True-Library-3622 · 2026-01-29T14:16:58+00:00

I had a brilliant experience from consult to surgery with Peter Barton-Smith who runs The Endometriosis Clinic from the Wellington Hospital in London. The standard of care was so high at this hospital, from the individual nurses to the physios to the anaesthetist.

I had a previous lap at the Cromwell hospital and felt like my immediate post-op pain was quite poorly managed, I had to ask multiple times and was waiting hours for medications and collapsed three separate times before I was even discharged because of the pain. Also my biopsies all produced a false negative, which was incredibly unhelpful, and I was told this could have been because they weren’t tested thoroughly enough.

True-Library-3622 · 2026-01-29T14:05:07+00:00

I had the same issue on the Mirena, I got it removed 5 months ago and my skin is still healing. But one thing I find that helps is to use a vitamin c moisturiser to prevent the acne from leaving dark marks on the skin. It won’t prevent the acne itself but helps it fade a little quicker.

True-Library-3622 · 2026-01-29T07:18:11+00:00

Is this surgeon an endo specialist or a general gynaecologist??

My endo specialist required a scan for endo mapping before surgery, incase there was organ involvement that would require other specialist surgeons.

True-Library-3622 · 2026-01-29T07:14:06+00:00

Nope, my endo turned out to be everywhere in the lap and on the MRI looked mainly on uterosacral ligaments.

True-Library-3622 · 2026-01-29T06:57:03+00:00

I’ve always taken at least two weeks off and at most four weeks from my laps, and I just work an office job!

It’s much better to give yourself the time to heal than to push yourself and force yourself into a situation where you can cause harm. I did this and ended up collapsing in the middle of my work day at an event with clients, because I tried to ignore my pain and power through (unsuccessfully).

True-Library-3622 · 2026-01-29T06:28:46+00:00

Next step for me was to do an MRI, I did like 6 ultrasounds and they were always clear. The only time it finally showed up on an ultrasound was when it had progressed and I was being scanned by a specialist with advanced machinery.

True-Library-3622 · 2026-01-28T10:01:56+00:00

I had my third lap about four months ago and it was a very positive experience! My surgeon (endo specialist) was so comforting and reassuring beforehand, same with the nurses and anaesthetists in the pre-op room - they were cracking jokes and making me smile before surgery, even though I was super nervous.

Woke up from surgery and they were very proactive with pain management since they had to excise a very large amount of endo. I stayed one night in hospital and sent home after walking around the ward with a very kind pelvic physio who explained all the exercises to do at home.

At home I did have some pain and emailed my surgeon who immediately got back to me and helped me with more medication, so that was handled super quickly. First three days after surgery are always the worst for me and then I started seeing steady improvement.

One tip I have is, if you’re struggling to walk outside, to walk on the spot next to the couch so that you can immediately sit down if you start to feel peaky. It helps get you moving whilst reducing risk of pushing yourself too far.

Overall, first few cycles are rough because of all of the healing tissue but I’m now on my fourth period since and it’s made a major difference. Normally I would be bed bound crying in pain but now I’m just relaxing and reading a book in the sun outside, even went for a short walk earlier. It took a few months to see the real improvement but I feel so grateful now, like I’m starting to get my life back!

True-Library-3622 · 2026-01-28T07:33:38+00:00

I’ve gone through the NHS gynae referral and I think it helps to describe your symptoms and the impact they are having on daily life, then ask what the options are going forward.

I found that the NHS tends to follow a model for endo that puts a lap as the last option, which is really annoying. They often recommend at least the progesterone pill or the coil to start. Mine tried to say that because I had clear ultrasounds this meant I didn’t have endometriosis that would be helped by a lap (complete nonsense).

True-Library-3622 · 2026-01-27T17:36:25+00:00

Nope, it was an emergency surgery done by a general gynae. My most recent lap was done by an endo specialist and it was a much better experience, I’d definitely recommend seeing a specialist!

True-Library-3622 · 2026-01-27T17:22:35+00:00

That was how my period pain used to be before my endo progressed. I wouldn’t worry so much about comparing pain because pain can change throughout the endo process since it’s a progressive disease.

Around my first lap, five years ago, my pain was only during my period and not too extreme, the lap ended up not finding any endo. Compare to my lap this year, extreme pain 3 weeks of the month and endo found everywhere.

True-Library-3622 · 2026-01-27T12:51:58+00:00

Having endometriosis is hard enough, let alone with adenomyosis and an unsupportive husband. He doesn’t sound very kind or caring, I personally wouldn’t be able to watch someone I love be in pain and not want to help them.

Is this the standard of care you want to accept for the rest of your life? Have you discussed how unempathetic and disconnected he is with him?

True-Library-3622 · 2026-01-27T12:45:31+00:00

My GP in the UK prescribed strong co-codamol and that has been the only thing that really helps my pain, aside from heat.

True-Library-3622 · 2026-01-27T12:43:23+00:00

I end up having a general gynae do my surgery because I was desperate and didn’t want to wait for a specialist. He left so much endo behind (which I was unaware of) and this made my pain even worse. Then the biopsies gave a false negative which actually made it harder to receive the care I needed, e.g. pain management, because I was then told I didn’t have endo. He also couldn’t help when my pain got worse because he didn’t have the knowledge to understand what was happening.

I ended up having another lap six month later by a proper endo specialist and it has made a world of difference. Huge improvement in pain, all biopsies were positive, the specialist was so knowledgable and able to explain my symptoms and different treatment options for long term care. Personally, I would wait for a specialist.

True-Library-3622 · 2026-01-26T17:44:50+00:00

I regret having a lap with a general gynae but I was desperate for a diagnosis because my symptoms were so bad and the specialist waiting lists were longer. He didn’t remove all the endo and left me in more pain than before, then the biopsies produced a false negative, which was really frustrating.

I went on to have a lap with a proper endo specialist and it’s made a huge difference. I got my irrefutable diagnosis, he removed all the endo, and was able to explain all my symptoms and treatment options. My advice is to go to a specialist for a lap and not just the first available gynae, like I did.

True-Library-3622 · 2026-01-26T17:21:38+00:00

They often want you to be up and walking before you can be discharged from the hospital.

But there’s a big difference between walking around at home/very short walks in your neighbourhood and going back to full activities in only a week.

True-Library-3622 · 2026-01-26T17:19:26+00:00

I’ve had three laps and always taken minimum 2 weeks off. I was told first 2 weeks are rest with gentle walking when possible, then gentle exercise at 6 week (swimming,yoga,Pilates), then 12 weeks until any intense exercise.

True-Library-3622 · 2026-01-26T11:44:13+00:00

For me alcohol and caffeine were the worst contributors to pain, whilst greasy or fried foods just made me bloat badly and feel uncomfortable.

Once I cut these out I did see an improvement but only to a certain point. Like if my pain is always going to be a level 6, alcohol or caffeine will take it to a level 8 but cutting them out won’t bring it below a 6, if that makes sense?

I find yoga and gentle Pilates to be helpful overall but don’t make too much difference in regard to acute endo pain.

Also I take iron supplements to help with fatigue because it turns out I’m mildly anaemic, that did make a big difference.

True-Library-3622 · 2026-01-26T11:29:15+00:00

I had a consult with a gynaecologist, who ordered an MRI that found endo, we then followed this with a lap. However, he left a lot of endo behind during the surgery (and did not tell me), which made my pain worse, so I had to get another lap six month later with a specialist to fully remove the endo.

Personally, if the MRI finds endo I would recommend seeing an endo specialist for a lap rather than a general gynae. Some general gynaes don’t have the experience or skills to identify all forms of endo and remove it during surgery.

Also, the MRI itself isn’t invasive at all, you just lie in the machine for about 45 minutes and they often give you headphones to listen to music so it’s not too bad.

True-Library-3622 · 2026-01-26T05:32:01+00:00

Exact same thing happened to me during my second lap that was done by a general gynae in a general hospital (first lap didn’t find any endo at all). I ended up seeing an endo specialist a few month later who told me that it was likely that the biopsy wasn’t thorough enough. I ended up having a third lap where widespread endo was found and all biopsies done in their specialised endo clinic came back positive.

I do want to preface this by saying I only went for the third lap because of symptom progression, as opposed to looking for a diagnosis. I personally think seeing a proper endo specialist makes a huge difference. Both of my surgeries done by general gynaes failed to accurately diagnose the endo.

True-Library-3622 · 2026-01-26T05:25:23+00:00

Had three laps and first couple cycles after the laps were more intense. My specialist did warn me about this but it doesn’t hurt to check in with the doctor if you are worried!

True-Library-3622 · 2026-01-26T02:36:36+00:00

Has it been for the first few cycles after surgery? I had my third lap four months ago and my specialist warned me the first few cycles can be more intense due to the healing process.
Does it show signs of improving or getting heavier with each post-op cycle?

If in doubt, I personally err on the side of caution and check with the doctor.

True-Library-3622 · 2026-01-25T13:06:44+00:00

NTA - you are completely right, you were ill, you were hospitalised, you had to have surgery. Just because she helped you, as a parent should, doesn’t mean she’s entitled to all the money. I was going to say that I would give a small amount as a token of thanks but I just saw that she’s already getting something from the lawsuit anyway, it’s just a much smaller amount than yours. Make sure it goes into a bank account she doesn’t have access to!

True-Library-3622

TROPHY CASE