Stage 4 endo diagnosed with emergency laparoscopy. Zoladex prescribed for 6m with follow up surgery after that. Seeking advice.

[nishnosh123]

Hi everyone!

I just stumbled across this website again and thought it may be a good place to seek advice from others who may have gone through similar events.

So my story is a bit of an odd one. I’m 29 years old and I had always had heavier periods that were more on the painful side. But I was able to manage it with taking a hell of a lot of OTC pain meds every 4 hours on days 1-3 while needing a hot water bottle as well from time to time. I thought this was normal and compared to others suffering with chronic pain I probably am very lucky.

I wouldn’t say I was completely asymptomatic - I had issues with constipation, food intolerances, UTIs occurring after penetrative sex but nothing pointing directly to endometriosis and none of the doctors seemed to make the connection either until 2018. This was when CRP levels came up as high in a blood test and my GP thought it could be an indication of Ovarian cancer so I was fast tracked to have an internal ultrasound which detected that my left ovary was kinda stuck to the wall which pointed to endometriosis (and thankfully not cancer) but I was advised that it’s probably mild and as it wasn’t bothering me that much then I just kind of left it.

Fast forward to March 2023. I fall down some stairs during a night out and break my ankle (this detail will become relevant later). So I’m in a cast and put on crutches. Then 4 days later after this fall I start having the most intense abdominal pain to the point where I was almost screaming. No period pain to date could have prepared me for that pain. But at this point I am absolutely clueless as I wasn’t due on my period at the time so didn’t really know why I was suddenly having these pains.

I go to a&e, they do the routine tests - urine and bloods and notice that I have a raised white blood cell count and CRP levels. The details then clicked in my mind and I told them this could be related to endometriosis. At first they seemed a bit dismissive and were more concerned it could be appendicitis but I had an ultrasound which pointed more to endo at which point it felt like the docs in a&e started to care less and handed me over to the gynaecology dept.

The first gynae doctor I saw in a&e took a look and basically gave me some spiel about going on the pill and keeping me in for a night to observe me and then come up with a plan for pain management (at this point they put me on codeine and oramorphe so I was a bit confused how just relying on that was going to go in the long term) but I went with it and stayed the night.

The next day was a bit of a shock to the system as the docs seemed to do a full 180 on the plan when the gynae consultant came on board and told me that they would need to perform emergency surgery in the next 2 hours- at the very minimum a laparoscopy, or at the other end of the spectrum, a full blown oophorectomy and open surgery. They asked me if I wanted kids in the future (I don’t really want them but feel like that’s beside the point when you’re suddenly talking about taking away a part of my reproductive organs away at 29) but anyway I didn't have much choice at that point so I signed the consent form and off I went.

Thankfully the surgery was as successful as it could have been. I'm pleased to report that my ovaries are all intact (woo!) but they did find 2 massive 5cm cysts on my ovaries (one of which had ruptured filled with endometriotic fluid which caused the sudden pain) and stage 4 endometriosis which had not only spread to the nearby organs in the pelvic area but has also reached up to my diaphragm and chest wall (how fun). I think during the surgery the focus was on the ovaries and uterus and they removed what they could here (as well as the bowel) but I'll need another surgery which they'll be able to do in 6 months.

In the meantime I've been put on Zoladex 3.6mg to stop any further growth. Out of this whole ordeal this drug is what's causing the most anxiety as the side effects seem HORRENDOUS and I dont have a good track record mentally with hormonal drugs. I've had one injection so far which admittedly hasn't been too bad (I'm due for my next injection soon).

I'm also currently having a CT scan and MRI and my next appointment is with an endometriosis specialist apparently in July I think.

So as I come to the end of my tale I just wanted to see if anyone had any advice on this situation. I'm concerned about any effect Zoladex may have on my broken ankle recovery as well as other more superficial aspects (does it have any effect on the aging of the skin?) I'm currently taking a number of supplements to counteract its effects inc vit D. Do you have any others you would recommend? Would you also recommend asking for HRT or does that sort of defeat the whole object? Should I even bother taking Zoladex? I enjoy having an active sex life so I'm a bit bummed out about the effects of going into medical menopause soooo young

To add even more madness to the mix despite going through all this and also not being to walk yet, I've started a new job. They've thankfully been really supportive and I also get private health insurance. Does anyone recommend switching from NHS to private? (I wasn't sure if it was worth it given my treatment is in progress and if I was even able to as it would be classed as a pre-existing condition now).

In terms of thinking more longer term has anyone had any luck using diet in trying to control this? I was also thinking about getting the mirena coil put in after all the surgeries are done to try and control it. Has anyone had any success with this?

But yeah literally any advice would be useful!

Also apologies for the monster essay! I wasn't sure what I was planning on writing but it ended up being my entire lifestory lol

TLDR: Recently been diagnosed with stage 4 endometriosis despite having fairly mild symptoms after a cyst ruptured. Endo has spread to my diaphragm. I will need another laparoscopy and the next availability is in 6 months time. I have been put on Zoladex until then. Any advice on zoladex and long term management to prevent growth would be appreciated!

Thank you!!!

[Fizzypoptastic]

Hi there,

Fellow stage 4 sufferer here. I had a lap just over 4 weeks ago now to remove a 10cm endometrioma as well as my right tube, adhesions etc.

I’ve been on the Mirena for 15 months & it has been amazing. I hardly have a period now (very light bleed for a few days). It has minor side effects like headaches & acne but nothing major. I chose Mirena as the hormones act locally around the uterus.

Good luck with your recovery & future treatments. xx

[nishnosh123 in reply to Fizzypoptastic]

Hiya! Omg 10cm sounds mad! Where was that located if you don’t mind me asking? Did the growth happen despite the mirena coil or was it there from before you had it put in?

Really glad the coil is working well for you though! I think it’s something I’ll definitely suggest to my doc going forward!

Best of luck to you as well with your recovery!

[Fizzypoptastic in reply to nishnosh123]

I only briefly spoke to the surgeon after the op & he said it was located in the pelvis. (Right ovary?)

A bit of a background: my initial MRI was in March 2021 & showed 2 endometriomas, 4 cm & 2 cm. I didn’t get the Mirena implanted until Feb 2022 due to appointment unavailability and then because I had polyps in my uterus which had to be removed before I could have the Mirena.

Not sure whether the cyst grew before or after the Mirena but I’m glad I opted for surgery as well as the Mirena as so much else was going on inside.

Another strange thing about the MRI was that it showed my left fallopian tube was blocked but apparently it was my right one which was blocked & was eventually removed.

I’m due to have a post surgery consultation & will ask the questions then.

They had to perform Ureterolysis during my lap as my left ureter seemed dusky. I’ve had a CT scan to decipher whether the ureter is working properly or not. If that is blocked then the surgeon said I may need a stent, which will need to be changed every few years. I suffer from urgent urination & needing to urinate often.

xx

[Nica68]

Hi

Your story sounds exactly like mine . Im still in the same stages as you diagnosed with stage four Endo and have been told that i may benefit from zolodex . Im sorry i can't give any advice but it was interesting to see someone in the same boat. If i could ask how you're getting on with the zolodex as im hoping they have another options i can go with instead.

Im not sure if this is even good advice but stay as hydrated as you can when i have any flare ups of endo its mainly when I'm not hydrated enough and ive managed to manage my pain at home when i do this otherwise it's a trip to a and e . Sorry i can't be more helpful. 🙂

[nishnosh123 in reply to Nica68]

Hello!

Glad you could relate but also sorry you’re also going through something similar! So I’ve been on zoladex for about 1 month so far and honestly I haven’t felt any different yet (I even had a period which I’m guessing was because I had my first shot around the time I must have been ovulating) but I have heard that your hormones increase before they decrease so I think I’ll have a better idea during month 2 of how it’s effecting me. My plan is to take it month by month and if I start to notice anything major I probably will stop taking it.

Were you diagnosed through surgery? What other options have they offered you?

Also I’m very fortunate that I don’t have issues with pain as much but I think staying hydrated is an excellent tip just in general!

Best of luck in your treatment!

[Nica68 in reply to nishnosh123]

So far, I've been diagnosed through mri scans, and they had also found a 10cm cyst on my ovary which originally was thought to be cancer but thankfully isn't. But so far have a uteric stent fitted as the endo is also affecting my kidneys.I'm still waiting for my treatment plan for lap surgery but havw been told that zolodex may be beneficial before any surgery .

[Endolemon]

I have been on Prostap injections for 3 months. It was blessing for 5 months: no pain ,no bleeding. Only my bones started aching but got to normal soon after.

I had Mirena fitted twice and it gave me horrible pain ,but maybe because I have fibroids in my uterus.

[girli1111]

I had zoladex between surgeries and was prescribed ‘livial’ as a ‘payback HRT’ at the same time, so no nasty symptoms. My first emergency surgery was like yours, a ruptured endometrioma, that they had identified as 8cm previously. I was told that severity of endometriosis doesn’t necessarily correlate to severity of symptoms. Like you I had heavy, often painful periods but had just accepted it as the norm for me, things only got troublesome in my late 40s. ‘Grade 4 deep infiltrating’ endo was my diagnosis. My ovaries were removed in two separate surgeries because of the damage done, but I havnt looked back since and am happily now taking HRT after specialist Endo surgeon referred me to menopause clinic because of surgical menopause after my second ovary was removed. Wishing you a speedy recovery from they broken ankle. Please keep moving! I say this as I had a deep vein thrombosis (blood clot) after my ruptured cyst emergency, and your immobilisation is a risk factor. I was unlucky, and I’m not saying this to frighten you, but please take care

[Moonglo]

Hiya, wow I thought I was unique in the way my endo was diagnosed - via emergency lap after a burst endometrioma! It was almost like a fast track avoidance of everyone else’s endless waiting experience (but without the broken ankle) 😆

I got put on Zoladex after my second emergency lap but was around 10 years older than you. The Zoladex became permanent shortly after, and after failed IVF, by my request. It’s been perfect for me as I haven’t had a period since and very few symptoms, nearly 10 years on. I have regular dexa bone scans, and due to my diabetes, regular blood tests for other things. Your ankle might be a challenge but if you’re only planning short term treatment with Zoladex, the risk of blood clots is probably low (listed as very rare side effect) as is having any bone issues (osteoporosis is listed as very rare).

You have more choices to make, due to your age. You also seem fortunate that you have access to private care. If you’re not sure then see how your next planned surgery goes, or is delayed for any reason, that might be a deciding factor.

Good luck!

[JOSANDY40]

Your story is very typical. Theres no point leaving NHS. What you need it a Endometriosis Clinic. I went to one in West London. Brilliant, Hammersmith. 6 Ops ! The Zoladex isn't easy to get into it but it was marvellous for years for me. The important thing it to is not to have too many operations. Every Op creates scars. Sometimes nerve damage. I've finally got a ridged bowel and problem's in Pouch of Douglas. I have Colonscopy tomorrow as I have inflammation on CT Scan with a narrowing in bowel. I had a run of Ops from age 26yrs. I've done well this last 10yrs with any, but they said I couldn't take Zoladex anymore. On it 10yrs+. So perhaps another Op. I hope I don't have a 2nd resection, my 1st at 26yrs. I hope I don't loose my bowel. I had it in my lungs and ears in my 30's but it went away. If you're intended to have a baby. Sooner the better. I failed IVF but I am glad now as I don't think I would of coped without support.

You're not alone and as the years tick by more and more woman find they have this disease.

My best J x

[Aimv]

Hiya, I'm also stage 4. I have my MRI scan yesterday and due to start Zoladex next week. They have prescribed HRT with my injections, so I would ask about that as the side effects are hideous.

If you can go private, I would.

I fully support the NHS but the way it is at the moment, you're not going to get the care you need and you have to think on what you need and not have to wait months.

I paid to see my consultant privately and he then put the treatment plan onto NHS and I'll still see him. The reason I did that was my GP refused to refer me to him on the NHS which was ridiculous.

I also have recto vaginal nodules (joy) so also waiting to see a colo-rectal consultant to work along side the gynae consultant.

It's all alot to deal with, and please don't feel alone with it. Ask questions on here if you need to. I've had lots of support when ive posted.

Take care x

[Mcyizml2]

I’ve had a mirina coil instead of zoladex because I was worried about going loopy on it. I’m 41 and my family is complete but also didn’t want to be crossing the menopause bridge just yet. Mine is extensive but symptom free now that I’ve lost weight and started exercising (massive shock that that could have such an impact!) so that was a factor. Found with the coil that I bled constantly for about 50 days then had one light period and it’s mostly stopped now, just occasional break through bleeding. Think it’s basically stopped my periods. I imagine this will help with avoiding progression and surgery but I’m getting a private mri in a year to keep an eye on it!

[Mcyizml2]

oh also - on private vs nhs. There are specialist endo centres with specialist surgeons, if you’re in one already (you can google it), I’d probably stay there because they are all geared up for complex care including complex surgery. Private offers you very fast access to a consultant so you avoid the waiting list (4 month target but can be over a year) and tests such as mris, plus nice facilities, but they don’t always have critical care for if it goes wrong. You also need to do your own due diligence on the consultant to ensure they’re part of the specialist team and working to the same clinical standards. Waits are really the main benefit of private in my view and it sounds like you’re already past this…