pinksparkles91
New member
3 excision surgeries xx
- Notice
Gembo
VIP Member
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 painkillers 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.
Frensham90
Active member
Hello. I’ve just finally been given the official diagnosis today following a laparoscopy, I’ve known for years but I’m sure you’ll know how long of a process the diagnosis is. My gynaecologist says he’s not prepared to treat me as it’s too widespread now in my pelvis, bowels and bladder so he’s referred me to Hull to a specialist unit. How are you doing? Are you on any medication?
joonielovers
Well-known member
yes please please! i would love that. i’m based in Cardiff. so anything near that would be great. i’m not sure if the pill is a good way to handle it, they never really gave me information or help just told me to go on it and it has helped so much but i just get anxiety and random periods and pain. if you can find out information i’d love that. thank you so muchOh dearsorry you’ve had it so rough. My gynaecologist wanted to put me on the pill but I refused hormones until he’d done a lap to see where the endo was. Once he saw how widespread it was he washed his hands of me and has now referred me to a specialist Endometriosis unit in Hull (2 hours from me). Not sure where in the uk you are but he said there were 20 centres like this all over the uk. I haven’t been yet but if I can find out any information about other centres while I’m there if you want me to?
Frensham90
Active member
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.
Sandra_1984
Well-known member
Yes 
AmberSpyglass
VIP Member
Had it, it took a total hysterectomy and ovary removal to be rid of it but I’d finished having children by then.
I didn’t have really horrendous monthly pain with mine bug did have the awful flooding bleeding and my mother and sister both suffered as well .
I didn’t have really horrendous monthly pain with mine bug did have the awful flooding bleeding and my mother and sister both suffered as well .
Hey guys, just after some advice... Always had painful heavy periods & they made me so poorly, I'd have back & leg pain, painful bowel movements the lot but just thought it was normal for periods as heavy painful periods run in my family. Went on the pill 8 years ago and I do experience pain but it settled for a bit. A few years ago I started having really painful sex, breakthrough bleeding & pain on my left side (sort of where my ovary would be) and it would come out of nowhere & stop me walking sometimes because it was so painful. Long story short I ended up under gyny and had a laparoscopy at the end of 2018. He told me that I had endo scarring on my left side but said he had no other concerns and I was discharged there & then, it was straight after my surgery and tbh I was just so relieved they hadn't found cancer (I've had a string of abnormal smears & treatments for this) that I dismissed it. Fast forward a few years and I still experience painful sex, I get terrible pain in my lower back, hips, groin and back of my legs, I get pain before I urinate and when I urinate and other symptoms that I just never clicked. Anyway, I've put it back to my Dr and waiting for a phone consult but just wanted some advice really because I don't understand the scarring but never receiving an official diagnosis. Plus, I feel kinda guilty for going to the GP as I know so many women with endo that are in so much more pain than I am. Does it sound like I'm putting 2 & 2 together & getting 6 or is it worth persevering with the Dr's? I'm just at the end of my tether.
Sorry if this doesn't make sense, I've just had a brain spill!
Sorry if this doesn't make sense, I've just had a brain spill!
nolongerlurking
VIP Member
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
thanks girls xSo, did he not remove anything? Was he just a regular gynecologist or an endometriosis excision specialist? The latter is harder to come by but will make all of the difference in terms of diagnosis and removal... most normal gyns can't even identify endo properly. I would put a request in with your GP to get a referral to a specialist, not just a regular gynecologist. You may have to push for it but don't give up. I am not sure where you are but here are a few links... also, make sure they specialise in excision removal NOT ablation... ablation just burns it off from the top, like pulling a weed without removing the root. Excision removes it completely with the root. Good luck. I found my surgeon through the Nancy Nook fb page.
The Endometriosis Clinic - Treatment for Endometriosis
An explanation of The Endometriosis Clinic's approach to the treatment of different forms of endometriosis
www.endometriosisclinic.co.uk
Reddit - Dive into anything
www.reddit.com
Frensham90
Active member
How did you find life after hysterectomy and ovary removal? How old were you if you don’t mind me asking? I’ve finished having children and I was told that removal or uterus and ovaries would be beneficial to reducing my pain but I’m not been 30 yet so it feels like a huge decision even thought I know I don’t want more children. I don’t usually have heavy bleeding but I have horrendous pains around ovulation and just before and during my period.
Yes
sorry to hear this. I’m fairly new to the diagnosis and have only had one operation so far but if you ever want to chat I’m happy to.nolongerlurking
VIP Member
Hi guys I hope you don’t mind me jumping in. So, I’m 24 now and I have a 6 year old nearly and a 2 year old.. in between having them, and before having them my periods have always been horrific. Long, heavy etc.. I got the copper coil fitted in June 2017 after my second. My periods have remained long and heavy, they last anything between 10-14 days, I get period pains 3 days before, the whole time during and 3 days afterwards. I finally went to the doctors and he took some bloods, sent me for a scan and I have an appointment in January with the gynae consultant.. the scan showed no fibroids and no Adenomyosis, they’ve said the next step is probably a laparoscopy to check for endometriosis as apparently this is the only way to diagnose.. he’s put me on tranexamic acid to lighten the bleeding and naproxen for the pain. He also suggested changing my coil to Marina as apparently the copper coil makes periods more painful and heavier but they remain the same as they always have done without the copper.. he said the usual treatment for periods like mine is hormonal contraception.. I’ve had the pill and the injection before and both made me feel absolutely crazy, I really do not want anything hormonal but is it really the only treatment available? Sorry it’s so long and well done if you got this far 
Pussy Galore
Well-known member
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!
bubbletea123
VIP Member
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.
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.
Frensham90
Active member
Oh dear
sorry you’ve had it so rough. My gynaecologist wanted to put me on the pill but I refused hormones until he’d done a lap to see where the endo was. Once he saw how widespread it was he washed his hands of me and has now referred me to a specialist Endometriosis unit in Hull (2 hours from me). Not sure where in the uk you are but he said there were 20 centres like this all over the uk. I haven’t been yet but if I can find out any information about other centres while I’m there if you want me to?I have the Mirena cook and it’s definitely helped lessen symptomsAnyone 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
Frensham90
Active member
Thanks, aww I’m sorry
. Hope all goes well with your surgery xbubbletea123
VIP Member
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.