Endometriosis

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Hi

I posted yesterday about my upcoming first appt with a specialist.

I feel so relieved and had a much better experience than I ever imagined.

He has a woman training with him for the next year or so, for the first half-hour I spoke to her - went through my history/symptoms, the medication I have taken for endo, my MRI results, options for endo, hormonal and surgery. She was very thorough and so wonderful. We both agreed that I am past the point of hormonal (depo is no longer working and I've been on it 10 years).

She went and got the Dr and had the surgery consent forms ready. Both she and he went over the surgery (lap and excision) process and answered any questions. They said surgery is about a 6-8 month wait but if I have any bad changes to get in contact.

I'm so delighted to have people finally listen. It feels like a weight lifted off my shoulders.

Good luck to anyone else that has an appt with a specialist soon.
Sorry I missed your posts, I haven’t been online in a while. So pleased your specialist appointment went well. I’m still waiting for mine to come through. My previous gynaecologist thought I had very minimal endo from mri results but when he performed a lap he found I had much more and it was more widespread than he first thought. He sewed me back up without doing a thing and has passed me on to a specialist which I’m yet to hear from.
 
Sorry I missed your posts, I haven’t been online in a while. So pleased your specialist appointment went well. I’m still waiting for mine to come through. My previous gynaecologist thought I had very minimal endo from mri results but when he performed a lap he found I had much more and it was more widespread than he first thought. He sewed me back up without doing a thing and has passed me on to a specialist which I’m yet to hear from.
I hope you hear soon.

The specialist I saw specialises in excision so he is going to do the lap and excision at the same time.

I have been in bed today as I was woken up at 5 am with my awful endo pain.

I will be so glad when he opens me up and sees what is actually in there, haha.
 
I hope you hear soon.

The specialist I saw specialises in excision so he is going to do the lap and excision at the same time.

I have been in bed today as I was woken up at 5 am with my awful endo pain.

I will be so glad when he opens me up and sees what is actually in there, haha.
Thanks, aww I’m sorry 😔. Hope all goes well with your surgery x
 
I am, 3 surgeries in 3 years and now been on the zoladex for a year and It puts me in a menopause except I'm only 27 :(
 
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Anyone found the marina coil helps? I’ve been prescribed tranexamic and mefenamic acid whilst I wait to see the gynae consultant in January.. my doctor is suggesting trying the marina coil.. just wanted some opinions :) thanks girls x
 
Anyone found the marina coil helps? I’ve been prescribed tranexamic and mefenamic acid whilst I wait to see the gynae consultant in January.. my doctor is suggesting trying the marina coil.. just wanted some opinions :) thanks girls x
I have the Mirena cook and it’s definitely helped lessen symptoms
 
yes you will unfortunately see me on the PCOS thread too.
Endo is painful I suffered for years pre my official diagnosis. I was actually pleased to get periods after about 10 years of hardly any due to the PCOS being dominant.I have had a horrible surgery but I still have pain
Its so frustrating and not fair :cry:
 
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Bumping this. I am having my lap and excision next week... I am really nervous. If you have had both, what helped you recover?
 
Bumping this. I am having my lap and excision next week... I am really nervous. If you have had both, what helped you recover?
Lots of rest after, i had peppermint tea to help the gas pass, keep hydrated and again plenty of rest!
Don't be afraid to ask for pain relief to take home - also dont compare your recovery times to others and have an "expectation" all 5 of my surgeries have had different recovery times.
Good luck ❤
 
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Bumping this. I am having my lap and excision next week... I am really nervous. If you have had both, what helped you recover?
I had both in 2014 and I was sent home about three hours after the op. I think the scars were just slightly tender and I was tired from the GA. so pleased with how it went, cleared up my endo and it’s only now six years later that my periods are starting to get more painful again, although nothing like ore surgery
 
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I hope it’s ok to ask this here but does anyone know how endometriosis makes sex painful? Over the past year it’s become pretty painful for me on almost every occasion. I went to the Dr and have now had some scans which of course show nothing so they want to do a laparoscopy as they think I have endometriosis. But I’m not convinced, I do occasionally get pretty painful periods but not every time. Sometimes it’s bad enough to make me cry or just really really painful but pain do usually make it bearable or get rid of it. I don’t feel my period pains are an issue, I only seem to get them right at the start and I know someone who has pains so bad she’s in bed for days. Mine are nothing like that. My problem is really just the painful sex. I don’t know whether to go through with lap or not, obviously I’d rather not but I just don’t see how it will help diagnose anything to do with painful intercourse. It’s really getting me down and I dont know what to do.
 
I hope it’s ok to ask this here but does anyone know how endometriosis makes sex painful? Over the past year it’s become pretty painful for me on almost every occasion. I went to the Dr and have now had some scans which of course show nothing so they want to do a laparoscopy as they think I have endometriosis. But I’m not convinced, I do occasionally get pretty painful periods but not every time. Sometimes it’s bad enough to make me cry or just really really painful but pain do usually make it bearable or get rid of it. I don’t feel my period pains are an issue, I only seem to get them right at the start and I know someone who has pains so bad she’s in bed for days. Mine are nothing like that. My problem is really just the painful sex. I don’t know whether to go through with lap or not, obviously I’d rather not but I just don’t see how it will help diagnose anything to do with painful intercourse. It’s really getting me down and I dont know what to do.
I would get the lap done. My Endo makes sex really painful to the point where I can't do it.
 
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I would get the lap done. My Endo makes sex really painful to the point where I can't do it.
Thank you, I am so worried to get it done. I really appreciate your advice I think I will talk to my consultant again x
 
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Sorry to jump on. But just wondering if any of you can identify with my symptoms?

I’ve been wondering if I have it. My whole life I’ve been so worried about getting it. I have no family history or anything I just know how hard it can be to go through so I’m so worried

I’m 25. My actual periods are fine, very regular, not too heavy and last 4ish days. I can have cramping on the actual day I start but it’s very manageable, I often don’t need pain killers or anything. This has been the case my whole life. I have been tracking my period for years and I’d say I’m very in tune with my body. I know immediately when something is off, especially in terms of my reproductive health because of how closely I monitor it.

When looking at endo symptoms it says things like ‘painful urination, painful bowel movements, painful sex’ but does it literally mean burning when peeing, pain when actually having a bowel movement and painful sex as in, actually pain vaginally during sex? This is where I’m confused. My pain happens after and not in the actual site but in my uterus/pelvis.

Over the last year and a half / 2 years I have noticed every month, 14 days before I start my period I get horrendous cramping, mainly towards the left side (where my ovary would be). It feels very different to my usual period cramps which is usually more central and less intense. It’s not constant, but I have flare ups of the pain several times a day (many times). I also have flare ups during the night and it wakes me out of my sleep (my normal period pain has never done this). When it wakes me I end up literally rolling around in bed, practically in tears, trying to find a comfortable position or some way to relieve it.

I have noticed things will aggravate it and cause a flare up of pain. At first I thought I was crazy. Basically
- A few minutes after peeing, I have a flare up.
- A few minutes after bowel movements (sorry if that’s tmi), I have a flare up
- A few minutes after sex or during, I have a flare up. During the time of these flare ups I definitely put off having sex because I don’t want to have to go through the pain following.
- A few minutes after or during exercise, I have a flare up
- A few minutes after or during cleaning (like hoovering, bending lots etc) I have a flare up
- After sneezing, coughing or even really laughing etc
- It almost like anything that uses my lower abdominal muscles causes me to have a flare up.

BUT it only happens within the 14 days before my period is due, lasts about 10 days then stops then a few days later I get my period which is totally manageable. I can literally predict all of it. It happens like clockwork every month. Each flare up lasts about 20 minutes. Taking pain medicine hasn’t helped (I’ve tried paracetamol and ibuprofen - I’ve never tried or needed anything stronger).

In the past 4 months I’ve noticed I can also not only feel it on the left of my pelvis but also in the left side of my back (which has me worried that that means it’s getting worse). The pain in my back is almost unbearable, it feels so deep, instinctively I feel like I need to rub the area, or punch (sounds ridiculous I know) but I can’t ever ‘reach’ the pain to relieve it. If that makes any sense?

I’m currently within the 14 days now and this month my left leg has also really been bothered. I’m not sure if the pelvic pain is causing my back pain then the back pain causing the leg pain.

Just wondering if anyone else has had similar experiences? Sorry if some of it makes no sense. It’s so hard to explain all the stuff going on without writing pages and pages (which I have probably done anyway so sorry again).
 
Sorry to jump on. But just wondering if any of you can identify with my symptoms?

I’ve been wondering if I have it. My whole life I’ve been so worried about getting it. I have no family history or anything I just know how hard it can be to go through so I’m so worried

I’m 25. My actual periods are fine, very regular, not too heavy and last 4ish days. I can have cramping on the actual day I start but it’s very manageable, I often don’t need pain killers or anything. This has been the case my whole life. I have been tracking my period for years and I’d say I’m very in tune with my body. I know immediately when something is off, especially in terms of my reproductive health because of how closely I monitor it.

When looking at endo symptoms it says things like ‘painful urination, painful bowel movements, painful sex’ but does it literally mean burning when peeing, pain when actually having a bowel movement and painful sex as in, actually pain vaginally during sex? This is where I’m confused. My pain happens after and not in the actual site but in my uterus/pelvis.

Over the last year and a half / 2 years I have noticed every month, 14 days before I start my period I get horrendous cramping, mainly towards the left side (where my ovary would be). It feels very different to my usual period cramps which is usually more central and less intense. It’s not constant, but I have flare ups of the pain several times a day (many times). I also have flare ups during the night and it wakes me out of my sleep (my normal period pain has never done this). When it wakes me I end up literally rolling around in bed, practically in tears, trying to find a comfortable position or some way to relieve it.

I have noticed things will aggravate it and cause a flare up of pain. At first I thought I was crazy. Basically
- A few minutes after peeing, I have a flare up.
- A few minutes after bowel movements (sorry if that’s tmi), I have a flare up
- A few minutes after sex or during, I have a flare up. During the time of these flare ups I definitely put off having sex because I don’t want to have to go through the pain following.
- A few minutes after or during exercise, I have a flare up
- A few minutes after or during cleaning (like hoovering, bending lots etc) I have a flare up
- After sneezing, coughing or even really laughing etc
- It almost like anything that uses my lower abdominal muscles causes me to have a flare up.

BUT it only happens within the 14 days before my period is due, lasts about 10 days then stops then a few days later I get my period which is totally manageable. I can literally predict all of it. It happens like clockwork every month. Each flare up lasts about 20 minutes. Taking pain medicine hasn’t helped (I’ve tried paracetamol and ibuprofen - I’ve never tried or needed anything stronger).

In the past 4 months I’ve noticed I can also not only feel it on the left of my pelvis but also in the left side of my back (which has me worried that that means it’s getting worse). The pain in my back is almost unbearable, it feels so deep, instinctively I feel like I need to rub the area, or punch (sounds ridiculous I know) but I can’t ever ‘reach’ the pain to relieve it. If that makes any sense?

I’m currently within the 14 days now and this month my left leg has also really been bothered. I’m not sure if the pelvic pain is causing my back pain then the back pain causing the leg pain.

Just wondering if anyone else has had similar experiences? Sorry if some of it makes no sense. It’s so hard to explain all the stuff going on without writing pages and pages (which I have probably done anyway so sorry again).
Hey,

I would try and get checked if I were you. The first thing I would do is trying to find a gynecologist experienced with endo, I found general doctors (in the UK) to be useless. Check out this map of endo doctors. https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4

Your symptoms do sound like they could be endo. I don't always have pain, in fact, my pain is the worst towards the end of my period. I am on the Depo shot now so don't get my period as frequently.

What is the leg pain like?

My symptoms:
- pain in thighs, that feels like I have done a really hard workout and it hurts to walk
- pain in my hips, pelvis, and lower back. It is really hard to describe but feels like my lower pelvis is being put through a grinder. I end up on the floor screaming and a bath is the only thing that helps.
- when I do a bowel movement it relieves the pain a bit but only for a few minutes.
- pain during sex. Not in the vagina but in my lower, back, pelvis, and hips, the same pain I mentioned above.

I would recommend requesting an MRI. They may suggest an ultrasound too but they rarely pick up endo, whereas MRI imaging is a little more likely to. I had an MRI and it showed my endo in my posterior culdesac. It is worth getting an MRI done too, in case there is a problem that isn't endo.
 
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Hi,
I had my surgery today. It was a laproscopy and excision with a Nancy's Nook recommended Endo specialist. https://m.facebook.com/groups/2285418136991574617/

My surgery took over 3 hours. The surgeon cut out Endo above my bladder and my pelvic wall. He took photos which I have a copy of and see him in 8 weeks for a follow up.

I am home now. I had a catheter and cyscoscope so it really burns to wee. My gas pain isn't too bad and my incision pain is ok, I have 4 incision holes. Quite scared to do my first post op poop, LOL. I have a prescription for pain killers, anti inflammatory and laxative.
 
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Hi,
I had my surgery today. It was a laproscopy and excision with a Nancy's Nook recommended Endo specialist. https://m.facebook.com/groups/2285418136991574617/

My surgery took over 3 hours. The surgeon cut out Endo above my bladder and my pelvic wall. He took photos which I have a copy of and see him in 8 weeks for a follow up.

I am home now. I had a catheter and cyscoscope so it really burns to wee. My gas pain isn't too bad and my incision pain is ok, I have 4 incision holes. Quite scared to do my first post op poop, LOL. I have a prescription for pain killers, anti inflammatory and laxative.
How are you feeling?! Sending you love and i hope you have a speedy recovery. I would recommend taking laxatives right away, will help in the long run! I bet you are relieved to finally know whats been going on! ❤❤