Feeling a bit lost after being ditched by hospital/GP after surgery/diagnosis

[Louise1610]

I'd been having symptoms for about a decade (and I have some other health conditions), but I finally got a referral to a gynaecologist last year and I had a laparoscopy on 27th May 2022 which the consultant came to me afterwards and said that she had found a couple of patches of endometriosis that she had treated with diathermy. She did say something about recommending hormonal contraception like the Mirena coil, but said my GP would speak to me about it. I got a copy of my hospital letter as I left (not much information except mild endometriosis, and that they had discharged me with some painkillers).

I've been on hormonal contraception for over 16 years now (I'm 32 now) and I came off of the Depo injection in March 2021 after being on that type for at least 8/9 years and I hated the side effects, plus I don't think it helped my underactive thyroid being on hormonal medications. I don't really want to go back onto hormones unless absolutely necessary.

It's now 2.5 weeks after my laparoscopy and my GP phoned today about my thyroid medication, but said nothing else about my endometriosis, so I think they've just discharged me with no intention of any follow up with the gynaecologist or GP. I don't even know where exactly they found the patches of Endometriosis.

Is this normal?

What are the other options besides hormones for endometriosis?

[0Jasmine]

Hi,

I hope your recovery is going ok it’s a lot to get your head around. I had my lap May 1st and pushed to get my results from hospital sent to GP and requested a copy. It only said significant endo and the areas on mine but I have so many other questions so waiting a call from GP on Monday to discuss. I’ve no idea what stage endo I am or what the next steps are but hormones are not for me so I bought a couple books to look at diet changes. You can also get hormone levels checked but I’m guessing you’d need to pay private for that. I also had to request a follow up with gynae post surgery and I’ve no idea when that will be. The process/communication is so frustrating. (Im 31). Take care x

[Louise1610 in reply to 0Jasmine]

Thank you! My dissolvable stitches did not dissolve so had to have those cut out yesterday and I'm still exhausted, but not as much pain as straight after the surgery at least! If it said significant, then yours must be at least stage 3 (Moderate) or 4 (Severe)?

I think the majority of the recommendations are hormone based unfortunately, but I'm keen to avoid those! What books did you look at for diet changes? I've had hormone blood tests before and regularly test my thyroid levels anyway as I self-treat underactive thyroid.

I'm surprised that even with your significant endo, they haven't automatically done a follow up appointment to discuss and answer any questions about the future!

I've always said that the NHS will keep you alive, but beyond that comes down to money!

And you! x

[Sleepy_Leopard in reply to Louise1610]

Hi, I had a laparoscopy on Sunday and I feel the same. They recommend the pill and discharged me. But the pill didn’t agree with me in the past so I want alternative treatments. I’ve seen acupuncture be recommended a lot online although not tried personally so not sure! Good luck

[Louise1610 in reply to Sleepy_Leopard]

Ooh, blimey, you must still be feeling a bit rubbish then only a few days after surgery! Hope you're resting and taking it easy! The pill is one of the most annoying I've found! And I can't really rely on the pill as I've had a gastric bypass so the absorption of it would be unreliable!

I've not seen about acupuncture? I'll have to have a look at it- I'm willing to give anything a go once! It's such a shame that we have to manage our own health and do our own research and keep pushing the doctor to stay healthy!

[Sleepy_Leopard in reply to Louise1610]

I know feels like once you’re treated you’re left to fend for yourself! I am quite sore but resting up (although I hate having to sit still and rest!!) It is a bit lonely to be honest! Now people know i’ve had the operation it’s kind of done in their head if that makes sense? Whereas I am still recovering now!

Hope you find something that helps you! I am the same, will literally try anything, which is why I found acupuncture online after researching some alternative treatments myself!

[Louise1610 in reply to Sleepy_Leopard]

I must say, I do like to stop and rest when I get a good reason to! I like it when it's quiet and you can just read or watch TV without any expectations! I know what you mean as people do think, well, you've had the surgery so it's all good now and fixed?! It is a bit daunting about the risk/unknown about whether it will grow back, where, how bad etc., so you will always have it in the back of your mind- is this painful twinge a new patch of endo or just 'normal' period pains, etc.?

As someone who already struggled with chronic fatigue anyway, the surgery really took it out of me and I'm still exhausted, and you're probably the same, so try to take it easy and only you can advocate for what you need. It's good to move around a little bit every so often, even though it's uncomfortable. My dog just doesn't know where not to put his paws, the clumsy fool !

[0Jasmine]

I would have thought so too but I’ve not heard anything yet so I’m chasing it! I wasn’t sure if moderate/severe meant it effected your bladder and bowel too?

The books I have are;

Period Repair Manual: Natural Treatment for Better Hormones and Better Periods - seems good for other info not just endo and lots of understanding on how the body functions

Endometriosis: A Key to Healing And Fertility Through Nutrition - more scientific and loads of stuff about food/dioxins/holistic approaches

Where did you have your hormones check/was it private? From what I understand, hormonal medicines don’t help unless you know what your hormonal imbalance is so I’m keen to look into that and even pay for it privately. Although I know they fluctuate quite a bit.

[Louise1610 in reply to 0Jasmine]

I think I'll give it a little time as the NHS isn't known for speed anyway and then I'll chase in a few weeks if I've not heard anything! I'd like to think that they aren't expecting us to know instinctively what we're meant to be doing!

Ok- thank you! I've heard of the Period Repair manual. I think the author also has a blog which I've read a bit about endo on!

Last time I got my hormones tested, I used Medichecks online and they do a full female hormone check including a couple of thyroid hormones. I don't think it includes cortisol though, but it's a good one to start off with and Medichecks usually do money-off periods, so it's well worth waiting for a 20% off to come up as it's not a cheap affair! They are usually finger-prick blood tests that you do yourself, but you can pay more to go to a nurse clinic instead I think they recommend taking the hormone test at a specific point in your period- maybe 2/3 days after you start your period, as the hormones *should* be acting in a certain manner! If you're wanting to test cortisol, I'd recommend a 4 point saliva test which shows the levels at 4 different points of the day so you can see whether your levels rise and fall appropriately throughout!

[Fenblue]

Do you have a 6 week follow up with the consultant? Ask all your questions then. I’m so sorry, GPS are so shit with this, I’m in a similar situation and rang them yesterday for a follow up as I was shocked they hadn’t rang me themselves to see if I was ok etc post op…..they didn’t even know what medication I’d been prescribed by the hospital 🙄 I’ve been put on medical menopause post op like lots of others on this forum - maybe ask why that isn’t an option for you? Xxxx

[Louise1610 in reply to Fenblue]

I've not heard anything- on my discharge paperwork from the hospital, it just says 'Follow-up required: No'. They just said to phone a number if I had problems within a week or so after surgery or to go to the GP after that. Maybe I'll receive a letter in the post at some point!

What's medical menopause and what medication do you take to make that happen? All I was told was I could go back on contraception like the Mirena coil and that's about it! I presume my endo isn't severe so they aren't too bothered what I do! xxx

[Fenblue in reply to Louise1610]

I have a Zoladex injection in my tummy every 28 days and daily HRT, they recommend 3-6 months but I’m on it for 6 months. I’d never heard about a medical menopause to treat endo until the day of my surgery and it sounds scary but actually it totally makes sense. You’re right though if it’s not severe it may not have been deemed suitable for you, but it’s still worth asking about. Good luck xx

[Louise1610 in reply to Fenblue]

So you're only on the Zoladex and HRT for 6 months? What happens after?

I will ask for more details when they finally book me back in! Medical menopause or going back on contraception isn't really an option I want, so hoping there is another path to take! xx

[Fenblue in reply to Louise1610]

The menopause or contraception gives your body time to heal properly post op without creating anymore endometrium tissue etc, I was so anti the pill for years and ironically that made everything worse which is why I’m now in this situation.

[Fenblue in reply to Louise1610]

After the 6 months I come off and my natural cycles and endometriosis will come back over time as there is no cure - the menopause or contraception just prolongs how long you can go without it building back up etc. I was told after coming off the menopause will be the best time to conceive before I go through too many cycles and it all builds back up etc.

[Louise1610 in reply to Fenblue]

Blimey! That's unfortunate that avoiding the pill did end up making it worse in the long run- something for me to consider! I guess you're glad for the small break in endo symptoms then! If you're looking to try to get pregnant then I wish you all the luck in the world- and I hope the treatment means that you can hopefully get what you want!

[Cockapoo-2016]

Hi.I am so sorry to hear you've been left without any support and unanswered questions.

I had my laparscorpy surgery back in November 2021. After my surgery I was told the surgeon found a 8cm endometriosis cyst and another on 6cm near rectovaginal.

I got discharged told to go back in two time to have a MRI scan. MRI scan showed no widespread of endometriosis.

All I got offered was mini pill, I not kin to take the mini pill, I feel I wasn't offered any other choices.

Completely let down by gynecologist and GP, I was never told what stage of endometriosis I am think possibility stage 3 due to finding patches of endo cysts.

At the end of f June I am seeing a nutritional therapist to help me change my diet and with my endometriosis, might be idea to think about seeing a nutritional therapist, there are diet books for endometriosis, supplements you can take ie endo complex that I take for endo seems to be helping me, cut coffee out, tea anything with caffeine, drink herbal tea ie there's tea call endometriosis tea you can getting on etsy site good for endo and hormones.

Hope you feel abit of comfort.

Best wishes

Anna

💙

[Louise1610 in reply to Cockapoo-2016]

Hello! It's looking like quite a few ladies are being left without full support unfortunately

I presume they removed the cysts as they found them? It's odd that they only gave you one option, even though you weren't keen on it! Did you take the mini pill or are you still working out what you want to do and looking at nutrition instead?

I don't think that the GP/gynae believes we need to know specifics and should just follow orders and not challenge what they recommend! I'd like to know where they found my endo because I don't know whether it was the endo that is causing my bowel problems or something else I've not yet discovered!

I think a nutritional therapist is probably a good idea and something I should really consider too. I've been seeing people recommend them for thyroid and now endometriosis, so I think I need to seriously look into it now! I'll have a look for that endo complex and tea you mention!

Thank you- good luck with the nutritionist! x

[Cockapoo-2016 in reply to Louise1610]

The sugeron removed both my cyst one on the left ovary and one near rectovaginal. It's a possibility you may have endometriosis on your bowel, when I went to toilet, to pass stool it gave me severe cramps, this would happen before, during and after monthly cycle, I also used to get blood on toilet tissue paper after using the toilet, maybe it's endo. This is your health and you need to know what is happening, you need to getcon the gp back and gynecologist, maybe contact them both and ask what they found, is it endo or something else. I had to fight left, right and centre to get answers, the NHS left me hanging and lost. It wasn't easy to get on there backs but got half answer which is better then nothing.

I have decided to go down nutrition route, I am 44 years old and feel the pill not right for me.

Best wishes to you too xxx.

[Louise1610 in reply to Cockapoo-2016]

Thank you- the consultant did definitely say endometriosis, but just didn't say on which specific bits, so I will ask when I next get to speak to her!

I'm definitely going to look into nutrition also as the hormonal route doesn't appeal to me either! xx

[Cockapoo-2016]

Your very welcome xxx.

[EmB18]

As others have said some people find acupuncture helpful for endo pain. I found making diet changes really helped my symptoms. We all respond to different things but taking wheat, sugar, caffeine and alcohol out of my diet and adding in more anti-inflammatory fruit and veg really helped me. I've also tried homeopathy and that helped too. It's worth trying a few things and finding what helps you. Good luck.

[Louise1610 in reply to EmB18]

Thank you- apologies for slow response, I didn't get a notification! It seems like trialling taking common things like wheat, dairy, caffeine etc. seems to be the way forwards! I use some homeopathy things for my dog, so I probably should start looking at things for me too!

[Chillyoga]

I had my op two weeks ago, similar in that they found some endo and treated by diathermy.I don’t get a follow up either… but I spoke to a GP who said if I ask for one I’ll get one. So try that, just call the hospital and ask to speak to your consultants secretary who should be able to make an appointment.

I’m going to wait for a couple of months and see how my symptoms are before I do that. I’d really like some clarity around what symptoms are from what etc.

But the nhs aren’t very holistic, when I asked about my bad back being linked to endo the consultant just said it would be bad posture!

Good luck getting answers.

Like you I’m still really tired and don’t have much of an appetite. Trying to make the most of time off because I was pretty burnt it before the surgery anyway.

My period is days late now and I’m assuming it’s normal… but I don’t know!

[Louise1610 in reply to Chillyoga]

I find it very strange that they don't tell you much and only speak to you in more detail if you ask for it! I'm undergoing some gastro testing separately, so will wait to see if anything comes from that, and then same as you, will see how the symptoms go over the next few months and go back to gynae if I need more help!

It does sound like your back could be related. I suppose you might have been compensating for your pain at the front/centre with the endo and your back has took the strain. Hopefully if the pain is less over time, your back won't have as much strain?

I felt tired for quite a while after- the surgery does really knock you sideways for a bit- especially when you have chronic fatigue before! I wouldn't worry too much about your period being late as it does tend to go a bit weird for the first few periods after surgery. My first 2 periods since surgery have both been late and duration/flow have both been weird, but I've been told it does settle within the first 6 months with periods and symptoms, so fingers crossed!

[Chillyoga]

6 months damn. I was led to believe that the first one after surgery would be awful but then I’ve got 5-6 good months (to try and get pregnant). It’s exhausting isn’t it?

[Louise1610 in reply to Chillyoga]

I think it's all individual and 6 months for everything to calm down will be an average and I think the 6 months is a time period where you could assess properly how well the surgery has helped with all of your symptoms and decide what next. It will be different for each woman and will also depend on whatever other problems you may have coexisting. My 2nd period was more normal than the 1st, albeit still a tiny bit late, so you might be absolutely fine after 1 or 2 periods and the surgery is meant to help quite a lot with fertility.

Good luck- I'll keep all my fingers and toes crossed for you!