Any endometriosis sufferers on here?

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I have recently been diagnosed with endometriosis (after 20 years of being overlooked by my hospital but that’s a whole other story ).

The wait to see anyone in the endo team at my local hospital is 40+ weeks, so I’ve just paid to see the local endo specialist privately. He wants to start me on Desogestrel to see if this helps before doing any surgery or prescribing stronger medication etc (I really don’t like the idea of Zoladex after he reeled off the side effects!).

In the meantime I wonder if anyone can let me know of anything else which has helped you, ie diet (is it best to go heavy on the protein such as the carnivore diet or does vegan, low carb etc help. Do any diet help at all?).
Has anyone tried any alternative therapies such as reflexology, acupuncture etc or any supplements, did/do they help you?

I am almost 51 so also in perimenopause. I have also had decades of guts issues and peri (and possibly the endo?) is making all of this so much worse.

I am willing to try anything, so any suggestions would be most welcome.
I already follow a low fodmap diet for my IBS/gut issues. I avoid wheat and dairy, low sugar, only drink water, walk for an hour each day but still suffering some what, so I’m looking to add in or tweak things in the hope of making everything feel easier.

PS, goes without saying that I am also very down-hearted atm, feel very low and angry/upset that this has been overlooked for so long. The specialist could not believe no one has ever suggested endo or offered me a laparoscopy in the 20 odd years I’ve been back and forth to the same hospital.

Me 🙋 and have been on desogestral for 8 years and as it's stopped my cycle my endometriosis symptoms have depleted. Not entirely but way less than when I was having periods.

Haven't tried anything else.

That’s good to know Frosty1000, I’m picking up my prescription tomorrow’s so fingers crossed.

I'm not officially diagnosed, but after many years of crippling pelvic pain especially around periods and ovulation, I finally got a referral to a specialist Pelvic Pain Clinic. It was a consultant there who told me she'd bet money on it being there, but they focussed on pain management. They had a holistic approach, so I got put on desogestrel, which has entirely stopped my periods, a huge relief in itself. I also had specialist women's physiotherapy (which was somewhat intimate), as they discovered I had a hypotonic pelvic floor, apparently common in women that have been in pain for so long, but also contributes to the pain. I've had to learn to relax my pelvic floor basically. They also put me on pregabalin, which is a nerve medication. That I was wary of, but it was never intended to be long term. They explained it as my nerves had become oversensitised to pain signals so I was feeling it more severely. I was on that for just under two years (I won't lie, coming off was dreadful for the withdrawal symptoms despite doing it gradually as instructed, but lasted about a week after I fully stopped then all ok).
Honestly, that place has changed my life and I'm so thankful for a non-specialist physio who suggested it. I still get some twinges and the odd achy day, but I know techniques to release now and it's nowhere near the level it was. I can lift weights, do long walks etc, exercise on a level I could never could contemplated before.
The particular clinic I got referred to was at the John Radcliffe in Oxford. I'm about an hour away, but it was worth it. I cried at my first appointment from the sheer relief of how they just understood!

Pycnogenol (maritime pine bark extract)! It took a while to work, but taken consistently it worked an absolute treat for me. My consultant refused to let me try any hormone treatment due to my age so I had 2 laparoscopies, the mirena coil and a butt ton of strong painkillers. Pycnogenol was absolutely life changing for me!

https://pubmed.ncbi.nlm.nih.gov/17879831/

Oh god, I have no advice sorry but I feel your pain. I had endometriosis which was luckily diagnosed when I was trying to get pregnant and I was operated on. I then went on the pill and into v early menopause which I must admit was a massive relief as stopped the gut wrenching pain and fainting. I really hope you get some relief and so sorry you’ve had to go through this for all that time

Thanks Pleasenomoreglitter I’ve had pelvic discomfort since my teens, this is probably something I really need to look into.

pinknsparkly That’s interesting. Is it something I can purchase online?

Thank you Holidayqueen1 it’s good to hear the pill helped you, I am hoping and praying I’ll get some relief from the mini pill 🤞

Desogestrel is otherwise known as cerezette. This pill helped me re endometriosis but laparoscopic surgery by excision is the way forward with this.
I would ensure that you go to a BGSE centre of excellence for endometriosis also. Link here

Find BSGE Accredited Endometriosis Centres in the UK

I would also think your gut and IBS symptoms are due to endometriosis as well. Some women do get misdiagnosed with IBS when it is infact endo that is the cause.

Any pain that is cyclical in nature and or gets worse up to and including menses should be checked out to determine if endometriosis is the root cause.

Thank you AttilaTheMeerkat, I’ve just checked via your link and luckily my local
hospital is a centre of excellence for endo, just a shame I ended up seeing a gynae who didn’t even consider it despite seeing him first in 1998 and then continued yearly consultations and procedures since 2015.

Yesterday I paid privately to see the endo specialist, he couldn’t believe I’ve been overlooked for 20 years. I am so upset especially as a laparoscopy will be at least a year wait and the consultation itself is a 40 week wait so I can’t imagine much being done this year on the NHS and sadly I can’t afford private treatment. I just keep my fingers crossed the Cerazette will help somewhat.

Yes, I am getting my first lap on Wednesday after being referred to gynae 2 years ago (almost to the day). I didn’t actually see a consultant until the end of November 23 and was then referred for a lap as I had been scanned privately in between and explained the private consultant suggested a lap but I couldn’t afford it privately. The consultant was lovely and immediately added me to the surgery list, he explained the waiting time was around 12 months but last week I got a call offering me a cancellation slot for Wednesday! I’m not sure how I managed to get the cancellation but it may be worth calling them and explaining you’d like to be considered for a cancellation? I was also on Desogestrel, as pp mentioned one of the brand names are cerazette, there is also cerelle. I found it really helped with my pain and heaviness. I still got periods but it was much more manageable! I also recommend reflexology, I found it so amazing and couldn’t believe the difference it made. I felt like a weight had been lifted after the treatment and it helped me feel better mentally too which is always good! I’m currently trying to eat an anti-inflammatory diet but chocolate is my kryptonite so I can’t give that up. I hope the pill helps and you find some other things to help ease your discomfort

Oh, good luck, I hope it goes well for you.

I will definitely give the hospital a call and see what they suggest.

I am thinking of trying acupuncture and reflexology again. I had reflexology years ago when I was struggling to get pregnant (after 5 years of trying), within a month I fell pregnant so I really do think it helps with things.

Can I ask what your symptoms were and how you all eventually got diagnosed?

Sorry to hijack, ignore me but all means, but in case this sounds familiar to anyone with endo..?

I suffer with extremely painful periods but am worried the doctor will just think I'm weak if I ask them to explore. Maybe I am? I have to take 1-2 days working from home or off work a month because on the worst days painkillers can't quite manage it and I'm doubled over. I was prescribed codeine but it makes me vomit so have to make do with solpadine max or paracetamol but I can rarely wait the 4h between doses.

I'm also struggling TTC.

I had a transvaginal ultrasound for something else and I asked about endo - they said no endo visible but that it also wouldn't necessarily be visible (?!).

Thanks

Hi m00ngirl you should definitely push it further. Doctors will have you believe pain is normal during periods and ovulation but it’s not.

The gynae is saw privately last week says pain should never be taken as a normal part of being female, he said he has 15 year olds in pain and their GPs are telling them to put up with it, when they actually have endometriosis.

Weirdly, I’ve never had much pain during my periods but have had awful painful ovulation from as long as I can remember. Pain which hurts to sit down and the only way I can explain it it that it feels as though every pelvic organ has swollen but at the same time is being clamped down by metal teeth!

I have also had very very heavy periods forever (flooding through clothes, seats etc and passing huge clots) which left me with very low iron stores (GP let me suffer for 2 years with ferritin of 3). It took me over 5 years to fall pregnant.

I constantly have a hot water bottle clamped to my pelvic area.

The other big thing for me, which still continues to this day is daily digestive issues which I’ve suffered from since 1998 (these have ruined my life tbh).

I also had recurring uterine polyps (not sure if they are related to endo or not?), had these removed 5 times during hysteroscopies. I’ve had an ultrasound scan on a yearly basic since 2015 and not once was endometriosis suggested by my gynae although (about 5 years ago) one sonographer did mention I had a chocolate cyst on one ovary but said nothing more about it. I’ve since found out a chocolate cyst is an endometrioma and related to endometriosis (my sister had a massive one removed 5 years ago, when her endo was discovered).

So if I were you I would push for more investigations, you shouldn’t have to put up with pain like that, especially if you are having to take days off for it (that was the first thing the private endo gynae asked me). It really isn’t normal regardless what a GP (or regular gynaecologist) might say to you. I’m so fed up with women being gas lit over their health issues, it’s really not fair.

Good luck, I hope you get somewhere with it.

Oh and endo is very very rarely spotted via ultrasound. Mine was spotted via a pelvic ultrasound and that was only because the consultant radiologist is an endo specialist. Laparoscopy is the gold standard for diagnosis. I now have a 12-18 month wait for that as it’s £7500 with my endo specialist privately!