Newly Diagnosed

[Sunflower1997]

Hi everyone,

Today I have finally been diagnosed with endometriosis after pushing for a gynae referral for 11 years. looking down the feed I can see that lots of you have had similar experiences to myself. I was wondering what other people’s experiences were with being diagnosed and treatment. At the moment I am being told that they can give me injections which will induce temporary menopause or to go onto the coil, both of which I’m not keen on. Any advice would be greatly appreciated. Thanks ☺️

[BryonyB]

morning! I’m 28 and have had three laparoscopys . My first one was done by a doc who didn’t specialise in endo so that didn’t go very well but my last two were for excision of my endo and afterwards my pain felt a lot better! I’m recovering from my third atm so hopefully will be similar. Between my first and third I had the Mirena coil which did help with how heavy my periods were and perhaps with the pain but it’s difficult to know as I’ve been on some sort of hormonal contraceptive to deal with bad periods since I was 14! Before my third surgery they offered me prostrap injections as a means of keeping things ticking over so to speak before my surgery but the side effects outweighed the pros for me and I felt I could hang on till my surgery. I’ve just had my coil removed as we want to try to conceive once I’m recovered so the surgery will hopefully have helped my chances with that!

I would say it is odd that they haven’t suggested surgery as this is the gold standard for treatment and the other things treat the symptoms not the actual condition. I would say well done on advocating for yourself and pushing for that referral! I found it very difficult, it’s taken me soo long too! I pushed for long time for an MRI which was the only scan my endo was showing up on.

[Sunflower1997 in reply to BryonyB]

Thanks for sharing your experience. I’ve been diagnosed thought a laparoscopy and had some of my end my endo removed. The gynae had said that they couldn’t remove the cells on other organs in my body. If you’ve had three surgeries has this all been to treat your endo?

[BryonyB in reply to Sunflower1997]

yes! The first one was more diagnostic and then my second in dec 2021 and third last week were for excision. Mine unfortunately grew back pretty quickly which was a shame but the surgery was still useful so I’m hoping this surgery alleviates my symptoms in similar way! I wonder why your gynae couldn’t remove the other bits. Sometimes they need a specialist surgeon in another area such as a bowel surgeon to help with the surgery or consult beforehand ☺️

[Sunflower1997 in reply to BryonyB]

I think you’re right, I don’t think she wanted to operate on the other organs herself! How are you recovering from your surgery? I had mine two days ago and feeling pretty sore

[Jsrzb in reply to Sunflower1997]

hi I no this is random but was your surgeon a endo specialist or just a general gyne surgeon I’m so worried because my surgeon ain’t a endo specialist I’m worried he misses it

[Sunflower1997 in reply to Jsrzb]

hi, mine was a general gynae.

[BryonyB in reply to Sunflower1997]

mine was a week ago and I feel pretty sore too! Every day it gets better and I’m more mobile now but I remember the temptation to do more too quickly from last time and that made it worse so I’m really going to take it slowly this time. What I struggled with the most last time was fatigue. I would get so tired after driving / popping out to the shops and would just have to come home and sleep. Take it easy and look after yourself. Everyone is different with their recovery. After my first it took me just over two weeks whereas last time it was 4 weeks with a phased return to work

[Sunflower1997 in reply to BryonyB]

I get what you’re saying with the fatigue. Never slept so much in my life. I’ve got a two week sick note, so going to take full advantage of that

[curlyjo]

I was diagnosed aged 45 which was fortunate because the treatments needed were always going to be shortlived as the menopause is usually a cure. And which it turned out to be the case for me. I was in a massive amount of pain (endo had spread to the perineum ouch) so for me they had to give me surgical treatment and halt the disease from spreading further and try and get me off the tramadol. Surgery didn't stop the pain so I was offered GnRH drugs. I had a merina coil fitted during surgery to stop the disease spreading further also. It took a few months for the coil to settle my periods and instead of the GnRH drugs I went on an anti inflammatory diet. Within 6 months I was off the painkillers and pain free. Now by aged 50 I was in perimenopause and oestrogen was falling rapidly. So a new regime started of HRT etc which superseded the endo and adenomyosis previously. The cure!! I'm 54 now and have a nice HRT routine plus testosterone and endo is a distant memory. All the best with your treatments and hope you get a supportive and knowledgeable doctor who can help you manage this journey which I can attest, won't be forever.

[megiiva in reply to curlyjo]

Oh, This is amazing, so there is a hope. Such a positive post I am 43 and in late perimenopause now. Had a symptoms of endometriosis, but they refused to check me as no test showed that I had. Last year had a fibroid removed and they did not saw anything (hens that is why did not wanted to operate again). End of last year they found have SIBO, so got treated for that but the pain and end belly were 24/7. Then I went back to have ultrasound just to double check if is all good and had endometrioma 3.5cm, which burst few weeks later. Still the doctor said is fine must be a gastric problem. I insist to have biopsy from the endometrioma and bum they found I have endometriosis in both ovaries, tubes and my bladder. Now 5 weeks after the operation still have the same pain and same symptoms. Not sure when this will go away, I am on painkillers and on Low Food Map diet and not sure what to do. have a follow up with the gynaecology doctor end of the month and after with the gastro doctor, but as I have been like that for over year and a half now, they just telling me to keep using hot water bottle and painkillers, diet, but does not help. How soon after the operation you start feeling betetr( symptoms wise)?

Thank you

[Sunflower1997 in reply to curlyjo]

Thank you for sharing. I’m so glad that you’ve found the best way to manage your endo. Gives me a lot of hope

[curlyjo]

Initially I felt OK after the operation but they can't surgically remove adenomyosis and also some of the endo was not removable ie chocolate cysts on the ovary. So all the while we are producing oestrogen the pain carries on. My first period after surgery was excruciating and this was while I was still on 8 tramadol a day plus paracetamol. The coil eventually stopped my periods which helped a bit but I didn't get out of pain (so was relying on my little cocktail) for a whole year after surgery. In that time I saw an endo dietician called Henrietta Norton and she put me on a special diet. As you've had a problem with your bowel you might be helped by seeing a specialist dietician cos there may be foods that can alleviate both at the same time. The book I followed was Take Control of Your Endometriosis. It's perhaps a slower way to bring it under control than GnRH drugs but had no side effects and took just 6 months. Now I'm in little doubt that during the year I may well have had a drop in oestrogen too as I must have been perimenopausal, but it was mostly the diet that did it. Maybe get a specialist dietician and in the meantime wallop it with painkillers as best you can, knowing that you can look forward to the menopause and there is an end in sight 😀.

[Sunflower1997]

thanks for the advice. Really reluctant to try some of the suggestions that my gynae has offered because I often have bad responses tk medication. Sounds like talking to a dietician would be really helpful for me.