Endo and Adeno

[CrochetDogMom]

Hey guys!

I have recently been diagnosed with Endo with adhesions of my ovary - uterus. I'm still awaiting further referrals to endo specialist. I did see a gyno who recommended a hysteroscopy and further referral to an endo specialist.

But on reading my referral letters on the NHS App also seem to have Adenomyosis also. This is all new to me and I havent really been told or given any information at all from professionals about this! I also feel this is the reason for the hysteroscopy, which again wasn't communicated to me and I felt the endo was being ignored!

Does anyone else feel very in the dark with their diagnosis? Medical professionals mentioned endo but I still haven't been given any formal information around it. I also feel like I was still getting my head around the endo diagnosis, then saw that I met the criteria for adeno in my US scan and now I'm going through all the motions again of now a new diagnosis.

If anyone has endo and adeno diagnosis and have had a hysteroscopy I'd appreciate hearing about your experiences!

[AllthatGlitters]

hello I have both. The Hysteroscopy for me was done at same time as my first laparoscopy so I was under anaesthesia at the time. I did however have a very large sanitary pad in my pants when I came round, bled a little and struggled to urinate for several hours. It took me 12 hours to pee. They said if I didn’t pee soon they would put in a catheter for a short while. Apart from that I found it easy, not really much to say, but I wasn’t aware of what was happening which is a good thing for me 💜

[CrochetDogMom in reply to AllthatGlitters]

Thanks for the reply! Was the struggling to urinate due to the hysteroscopy or the lap, or a bit of both? Mine is just going to be done under local anaesthesia. I'm very nervous as I've had cervical biopsies before and I bled loads from that. 😭

[AllthatGlitters in reply to CrochetDogMom]

The struggle to urinate was because of the Hysteroscopy, it’s normal to be nervous. I felt so sick on that day and my heart rate and BP were through the roof x

[BloomingMarvellous]

They often occur to together - many of us think of them as the Ugly Sisters !

Less is known about adenomyosis but it is similar to endo here the lesions are within the uterine structure causing bleeding and awful pain. It used to be diagnosed by appearance of a very thick uterus that was bulky and lumpy appearance but now that's been expanded as they've understood it also appears in more diffuse forms speckled through the uterus. It's usually properly confirmed only once the uterus is removed via full biopsy which often is at odds with those of us who want to try for kids.

It's associated with awful pain during periods with significant blood loss, clots etc. Outside of periods it can also cause severe back and leg pain, interference with both bladder and bowel function. It does interfere with embedding of the placenta which can lead to failed pregnancies 😢 and there's a question as to if it starts on old sites of where a placenta implanted.

Treatment is limited here with unproven studied use of coils etc but in New Zealand they have a wider range of approaches to care than the UK using a combination of surgical, medical and functional medicine methods successfully.

[CrochetDogMom in reply to BloomingMarvellous]

Thank you so much for the information! This has really helped! I definitely feel my symptoms make more sense now. I seem to have pain throughout my cycle, expecially back and leg pain.

I have been diagnosed due to the appearance on a ultrasound and they are going to do they hysteroscopy to explore further, take biopsies and remove any tissue which may be interferring with conception.

I think the fact it can impact on fertility and my ability to conceive is one of the scariest parts. I'm aware with Endo there's still a chance but after reading about Adeno it seems that has more of an impact.

Hoping with the hysteroscopy I will get more answers and support in relation to my fertility now it has been identified.

[BloomingMarvellous]

I'd invest in a book by Katie Edmonds called Heal Endo. I used to work medically in field of infertility and pain relief in labour and her info is sound and solid advice. Acupuncture with a specialist in infertility will also increase success of any IVF protocols if needed.

[CrochetDogMom in reply to BloomingMarvellous]

Thank you! I'll have a look into all of this! Your responses are much appreciated!

[BloomingMarvellous]

Bless you and hope things go well 🌸