Endometriosis and Adenomyosis

[joonielovers]

Hi, everyone. I have been reading this chat, and it got me thinking about my own surgery (laparoscopy) which I had back in April. (I believe I posted about it afterwards).
The outcome was that "my womb is large for my age" (I am about to turn 22), and that was it. They did not find endometriosis, which was why I had the surgery.
I have previously had many scans and blood tests as well and found nothing except a blocked fallopian tube. I then stayed in the hospital overnight on IV and was given antibiotics for two weeks, I was 16 at the time and have not had it since then.

Does this mean that I could possibly have adenomyosis? After the surgery, they just told me to contact my doctors, and that was it. I have been going to the doctor since I started my period at 10/11 years old and have always had pain. I used to have worse pain than up until recently, where now my periods always seem to come late or early, and I rarely lose blood. and if I do, it is brown/very dark red compared to before, where it was heavy for 7/8 days straight. I worry about my fertility. I am not trying for a baby yet, but I have a boyfriend of 2 years, and we do want children in the future, which worries me.

If anyone has any advice or idea what is going on, that would be really helpful!
Hope everyone is keeping well

 

[queenamber]

Hi, everyone. I have been reading this chat, and it got me thinking about my own surgery (laparoscopy) which I had back in April. (I believe I posted about it afterwards).
The outcome was that "my womb is large for my age" (I am about to turn 22), and that was it. They did not find endometriosis, which was why I had the surgery.
I have previously had many scans and blood tests as well and found nothing except a blocked fallopian tube. I then stayed in the hospital overnight on IV and was given antibiotics for two weeks, I was 16 at the time and have not had it since then.

Does this mean that I could possibly have adenomyosis? After the surgery, they just told me to contact my doctors, and that was it. I have been going to the doctor since I started my period at 10/11 years old and have always had pain. I used to have worse pain than up until recently, where now my periods always seem to come late or early, and I rarely lose blood. and if I do, it is brown/very dark red compared to before, where it was heavy for 7/8 days straight. I worry about my fertility. I am not trying for a baby yet, but I have a boyfriend of 2 years, and we do want children in the future, which worries me.

If anyone has any advice or idea what is going on, that would be really helpful!
Hope everyone is keeping well

Did you have surgery with an endometriosis specialist? Most gynaecologists aren’t specialised in endometriosis and don’t look as in-depth in surgeries as specialists would. Endometriosis loves to ‘hide’ so you really need a skilled specialist. Skilled surgeons will search from your pelvis up to your diaphragm.

Why would they give you antibiotics for 2 weeks? It’s not an infection. Or was that related to your blocked tube?

If you’re having irregular periods you may have PCOS or a hormone imbalance.

A bulky/enlarged uterus is usually a sign of adenomyosis but you would also have much heavier periods.

 

[joonielovers]

Did you have surgery with an endometriosis specialist? Most gynaecologists aren’t specialised in endometriosis and don’t look as in-depth in surgeries as specialists would. Endometriosis loves to ‘hide’ so you really need a skilled specialist. Skilled surgeons will search from your pelvis up to your diaphragm.

Why would they give you antibiotics for 2 weeks? It’s not an infection.

I'm not entirely sure. I was only told 1 week before the surgery that it was happening as I was put on the waiting list by the NHS, and it just so happened that someone had cancelled theirs.
I was introduced to the surgeons on the day of. They said they were gynaecologists, and that was it really; it was at the Princess of Wales hospital in South Wales, if that is of any help.

I'm not sure about the anti-biotics; back then, they said it was probably the tube that caused the pain, but then found out that it wasn't. Before my surgery, the surgeons told me that I might have hydrosalpinx and asked if I wanted my tube removed if it was blocked... I didn't know what to say as it was so on the spot, and I had no one to talk to about it at that moment. After the surgery, they said that they did not remove my fallopian tubes as they were not blocked.

My mum struggled with conceiving; she did IVF and had miscarriages but managed to have me and my sibling naturally. I'm not sure if any of this takes part in my period issues; my doctors are not much help, really.
---

I'm not entirely sure. I was only told 1 week before the surgery that it was happening as I was put on the waiting list by the NHS, and it just so happened that someone had cancelled theirs.
I was introduced to the surgeons on the day of. They said they were gynaecologists, and that was it really; it was at the Princess of Wales hospital in South Wales, if that is of any help.

I'm not sure about the anti-biotics; back then, they said it was probably the tube that caused the pain, but then found out that it wasn't. Before my surgery, the surgeons told me that I might have hydrosalpinx and asked if I wanted my tube removed if it was blocked... I didn't know what to say as it was so on the spot, and I had no one to talk to about it at that moment. After the surgery, they said that they did not remove my fallopian tubes as they were not blocked.

My mum struggled with conceiving; she did IVF and had miscarriages but managed to have me and my sibling naturally. I'm not sure if any of this takes part in my period issues; my doctors are not much help, really.

I used to have very heavy periods, but no more, I don't display PCOS symptoms except the period issues, really, so maybe it is a hormonal imbalance.

 

[queenamber]

I'm not entirely sure. I was only told 1 week before the surgery that it was happening as I was put on the waiting list by the NHS, and it just so happened that someone had cancelled theirs.
I was introduced to the surgeons on the day of. They said they were gynaecologists, and that was it really; it was at the Princess of Wales hospital in South Wales, if that is of any help.

I'm not sure about the anti-biotics; back then, they said it was probably the tube that caused the pain, but then found out that it wasn't. Before my surgery, the surgeons told me that I might have hydrosalpinx and asked if I wanted my tube removed if it was blocked... I didn't know what to say as it was so on the spot, and I had no one to talk to about it at that moment. After the surgery, they said that they did not remove my fallopian tubes as they were not blocked.

My mum struggled with conceiving; she did IVF and had miscarriages but managed to have me and my sibling naturally. I'm not sure if any of this takes part in my period issues; my doctors are not much help, really.
---

I’m sorry. It can feel so overwhelming. I’ve been there!

One thing I’ve learned in the last few years is to be your own advocate and keep pushing for answers when something isn’t right. I’ve learned more about endometriosis and adenomyosis from online groups than I did with my first handful of doctors which is outrageous! I went through 5 gynaecologists before finding my specialist. Nancy’s Nook is a great resource for finding specialist surgeons, I would highly recommend it, especially their Facebook group.

It sounds like you may need a second opinion or more clarification from your doctors.

 

[Ashshakur93]

Hi everyone thought I would update and ask some advice please?
I had a laparoscopy, hysteroscopy and endometrial biopsy yesterday. Soon as I came round in theatre the surgeon told me I had no endometriosis. Just swollen ovaries? All my symptoms match endo. My MRI suspected adenyomosis possible endometriosis but every specialist I’ve seen has said all my symptoms match endo. I’m now so lost with what to do next, do I just cope with no diagnosis or do I ask for a second opinion? When reading the Facebook groups some women have had several laps before endo was even found? My surgeon was a gynaecologist not a specialist in endo? It was done via the NHS. Can I ask for an endo specialist on the nhs? Sorry for all the questions. The surgery has left me with more questions than answers. I feel so lost

 

[Monkeymagic85]

Hi everyone thought I would update and ask some advice please?
I had a laparoscopy, hysteroscopy and endometrial biopsy yesterday. Soon as I came round in theatre the surgeon told me I had no endometriosis. Just swollen ovaries? All my symptoms match endo. My MRI suspected adenyomosis possible endometriosis but every specialist I’ve seen has said all my symptoms match endo. I’m now so lost with what to do next, do I just cope with no diagnosis or do I ask for a second opinion? When reading the Facebook groups some women have had several laps before endo was even found? My surgeon was a gynaecologist not a specialist in endo? It was done via the NHS. Can I ask for an endo specialist on the nhs? Sorry for all the questions. The surgery has left me with more questions than answers. I feel so lost

Hi,

I recently had a lap done and at the time she did find what she said was mild endo, however, when the histology came back I have a condition called endosalpigiosis which acts similar to endo but is actually fellopian tube tissue.

I also have suspected Adenymiosis as apparently my uterus is 3 times bigger than it should be and waiting on an mri to confirm.

Did they take any samples?

What I would say is fight for yourself, they will fob you off. I would also ask for a female dr, the male dr I saw told me there was nothing wrong with me (he was 100% sure )

 

[Ashshakur93]

Hi,

I recently had a lap done and at the time she did find what she said was mild endo, however, when the histology came back I have a condition called endosalpigiosis which acts similar to endo but is actually fellopian tube tissue.

I also have suspected Adenymiosis as apparently my uterus is 3 times bigger than it should be and waiting on an mri to confirm.

Did they take any samples?

What I would say is fight for yourself, they will fob you off. I would also ask for a female dr, the male dr I saw told me there was nothing wrong with me (he was 100% sure )

Thank you for replying
They took samples during the endometrial biopsy or the hysteroscopy I think? I’m hoping they flag something I’ve been in such horrendous pain for so many years now so I feel so deflated now. He was a male doctor who just said there’s nothing but surely there has to be something?! He said if I do have adenyomosis this wouldn’t be confirmed by him as this is in the muscle walls and he wouldn’t find it as he’s a gynaecologist he thinks it’s a bowel issue but the nurse afterwards said it doesn’t seem like a bowel problem and endometriosis fits all my symptoms x

 

[Monkeymagic85]

Thank you for replying
They took samples during the endometrial biopsy or the hysteroscopy I think? I’m hoping they flag something I’ve been in such horrendous pain for so many years now so I feel so deflated now. He was a male doctor who just said there’s nothing but surely there has to be something?! He said if I do have adenyomosis this wouldn’t be confirmed by him as this is in the muscle walls and he wouldn’t find it as he’s a gynaecologist he thinks it’s a bowel issue but the nurse afterwards said it doesn’t seem like a bowel problem and endometriosis fits all my symptoms x

I would chase your results, endosal, causes pain, I also had an area of constant back pain and it turned out I had fused tissue due to previous scarring, she released it and no more back pain.

My heavy bleeding isn’t caused by endosal and likely to be andenymyosis.

I would ask for a second opinion and a female dr, there is nothing worse than being told by a male who has never experienced any periods etc telling you he knows your body.

I’m fortunate to have private healthcare and even then it has taken 3 consultants to get to this point. Don’t give up fighting for your rights.

 

[Sillybillyy]

Hiya, was hospitalised with severe pain last night from a&e, had a gynie consultation and they think it's endometriosis. So did my GP a few days ago and so did I when this started.

Im going to opt for surgery as means of getting an answer because I'd quite like my tubes tied whilst they're in there.

This feels like a death sentence, obviously it coukd be worse but it's such a big deal

 

[Sillybillyy]

Okay I wrote that following what I think was probably quite a hopefilled naive conversatio with the doctor in gynie. After reading what all of guys have been through I feel quite daft thinking it was all going to be simple and I'd almost reached a formal diagnosis without too much push back if this is indeed Endo.

 

[Ashshakur93]

Probably a massive long shot but can anyone help me understand what this means? After my laparoscopy the surgeon told me no endometriosis was found I’ve had nothing since. They’ve discharged me so won’t help me understand this. My GP won’t help as they didn’t refer me for the surgery. I’m at a loss.

 

[queenamber]

Probably a massive long shot but can anyone help me understand what this means? After my laparoscopy the surgeon told me no endometriosis was found I’ve had nothing since. They’ve discharged me so won’t help me understand this. My GP won’t help as they didn’t refer me for the surgery. I’m at a loss. View attachment 2743490

This isn't meant as an attack on you at all, but why on earth are doctors discharging patients without explaining their findings!? It makes me so angry!!

I don't know how the UK system works but please try to get back in touch with them. You need answers! Was your surgery with a standard gynecologist? Most of them don't know what to look for and aren't as in-depth as endometriosis specialists. A lot of them tell patients 'no endometriosis was found' because they don't have the expertise to look for it properly. I would really push to see a proper Endo specialist if you can.

 

[Ashshakur93]

This isn't meant as an attack on you at all, but why on earth are doctors discharging patients without explaining their findings!? It makes me so angry!!

I don't know how the UK system works but please try to get back in touch with them. You need answers! Was your surgery with a standard gynecologist? Most of them don't know what to look for and aren't as in-depth as endometriosis specialists. A lot of them tell patients 'no endometriosis was found' because they don't have the expertise to look for it properly. I would really push to see a proper Endo specialist if you can.

Oh I completely agree! As soon as I had my laparoscopy and had JUST come round in surgery he told me no endometriosis had been found. They discharged me 3 days ago. I called them this morning to see whether someone could explain it to me he said no your back with the GP then I called them and they said no it has to be the gynae team as they sent you for the surgery. It’s genuinely ridiculous. I will be pushing for an endo specialist but my gp won’t see me until March! To even get the surgery I had to wait 2 years and only after putting a massive complaint in was I actually seen.

 

[NoddyFromToytown]

I have endometriosis and have had five laparoscopic treatments so far - most recent was last year. My options going forward now are either a full hysterectomy or another Mirena coil. I'm 38 and don't want children but I don't want to face the menopause just yet given that I can't take any sort of HRT due to familial breast cancer risk.

Previously been on the Mirena and found that it was quite good for me - still had a lot of pain but no bleeding. However, had it removed during last surgery partly because of worries re hormonal contraception and cancer (now refuted by research) and to give my body a break - BIG MISTAKE. I am in constant pain now and have a cycle of less than 3 weeks meaning I only have the odd day where I'm not either bleeding/ready to kill someone.

The only issue is I had to have my last one put in under GA. I have a very very high pain threshold but my body physically could not tolerate having it done when awake. This was pre-Covid and the process all happened pretty quickly but I've just found out today my appointment with the gynae isn't until JULY! And then will be months after to be put on the list.

My GP and local sexual health clinic don't offer any alternative - no sedation, gas and air, diazepam, etc. It's either hospital admittance for GA or couple of ibuprofen fully awake. I'm at my wits end with this pain - what would you do?!