Hi all, any advice would be greatly appreciated. To cut a very long story short, I suffer with endo and Fimbrial cysts. My left ovarie is embedded in my bowel and all my bits are stuck down like cement. I also have masses of adhesions (and I mean hundreds) due to 5 major surgeries.
Everytime me and my partner make love, 5 seconds later I suffer the most horrendous pain in my tummy and it lasts for around 20 minutes. I'm on various medications and liquid morphine. None of these take away the pain. Having sex with my partner is the only pleasure I get nowadays but knowing I'm going to endure the 20 minutes of sheer agony afterwards really is putting me off having sex with him at all. Please can anyone tell me why I'm getting these horrible pains and if there's any way I can prevent it. Thanks for listening. 👍 xx
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RexyTony69
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I get this pain too but im sore in my pelvis for two days and i tend too bloat up real bad. I don't know why it is but my thinking is it must be the adhesions i don't have as bad adhesions as you my tubes have them and i have dense scar tissue from belly button to bowel not sure where endo is they've never told me where it was found and lasered off. But i bleed if i have sex the week coming to my period i will bleed right up to my period if i have sex that week.
Nothing relieves it for me apart from my heat pad. Or a warm bath.last night i tried a castor oil pack which was nice and relaxing its supposed to help detoxify insides.
I know i haven't been much help just wanted you to know i get this and what i think it may be.
I do believe that for us endo girls pain with and after sex is a symptom. I think it must be the insides getting irritated plus organs joined together. Plus all the blood rushing to that área causing us pain. 😥
It is a load of 💩 for us ladies but try not to let it put you off. Being intimate is important for us and if its one of your only joys its nice to keep it. Just try not think of it and maybe take pain killers an hour before you do it. May or may not help and run a hot bath that's waiting for you when your done.
Hiya and thanks for taking the time to reply. Yeah I was thinking it was the adhesions but never said as much as wanted someone else's opinion. I take meds before sex and morphine, but it doesn't help. I can only describe the pain as a period pain x 4. The worst period pain ever.
Hey, I guess that's what they mean by a pleasure, pain thing lol. Us women go thru hell, I'm glad I've a partner who understands. Thanks for your input. Much appreciated xxx
I have a less extreme but much longer lasting (24-36hours) variant of this symptom. I have a deep nodule attaching my cervix to my bowel which is why. Its really hard but I am trying to focus less on penetrative intercouse and more on other ways of making love and being intimate. Unfortunately I experience the same effect with orgasms.
Same here. With the climax situation. That's why I think it's something to do with all the blood rushing to that area but with us it causes pain due to adhesions. It's awful and we shouldn't have to go through this. I'm fully annoyed right now I've come up to my mums for the night and her dog jumped right on my pelvis I'm in agony upstairs with hot water bottle really not happy. Nothing to do with the post but had to get it out I feel so 😠 xx
Oh dear, I feel for you. One little movement to the tummy and off it sets. Get that hot water bottle on it. Yeah it's deffo adhesions. Can't they do anything for you? Can't you have them cut out etc? I don't fully know your situation. Hope you don't mind me asking xxx
I don't mind you asking at all hun. I had a lap in February they found endo and treated some. They said I need to get referred to surgeons because it's near or on my bowel they couldn't tell it's that dense. I'm going to try and see a specialist I don't want too many surgeries if I can avoid it I will. Xxx
Good that you will try to avoid surgeries. I didn't realise when I was younger so opted for surgery everytime as I just wanted rid of the pain. Not 1 surgeon ever told me that multiple surgeries would leave me like I am now. Yeah ya gotta be careful if it's near/on your bowel as you don't want to end up with a colostomy bag on. I was quite lucky as my surgeon managed to take half my ovarie away but the other half is embedded in my bowel and that's where it's staying!!!
It's crazy isn't it. I never knew about the complications of after surgeries until last year when I got a new symptom "ovulation pain" which is like my monthly terror. Then I came across adhesions. (I had a c section in 2013) since then haven't conceived. So basicly the c section has messed my tubes up could be the endo but I conceived numerous times before that unfortunately just never ended well.
Once I found out about endo also last year I knew that this is what iv had since a teen and was baffled why it had never been mentioned to me. I mean I'd been sent in scans put o mirena all sorts not one doc or nurse ever mentioned it. I told them I had it. Crazy
Iv done all my own research on adhesions and endo and with the help of the lovely ladies on here. I'm starting to make a plan for my next step in this world of pain and fatigue. My back and pelvis is on one. I got up with my daughter fed her breakfast and she's now being looked after by her grandma and iv come back to bed. Grateful for the help after explaining to my mum exactly what I go through she never got it before. Still don't think she totally does but the help is much appreciated
Hope your ok sorry you've had to go through this headache hun it's not nice and surgeons should explain what the outcomes of surgery is so we know what to expect. Instead of finding out when the damage is done 😞 xxx
Absolutely crazy. I've been up all night in pain. Not slept either so I'm off back to bed too. I had ectopic pregnancy at 21 so that was my first surgery, it's been downhill since then. At least you can be grateful for your lil girl and me for my adoptive son. Without him I'm nothing......
People don't understand unless they've been thru the same. Thank god for this site. It's great talking to people that can relate to the pain I go thru. I don't feel so alone. Sorry though that others suffer this horrendous condition. Sleep well and take care xxxx
Your so right I'm super grateful for my little girl she's my world just worried she'll have the same that will break my ♥.
Sorry you've been through so much hun. It's awful it all makes us stronger. Even though sometimes we don't feel it.
I had a bit of an emotional night last night the flipping dog jumping on me set me off. I'm in pain my pelvis is crazy tender and trying to break wind is killing me.
Hope you have a nice sleep hun. All the best xxx 😊
Hey, had a lovely sleep thanks. Can I ask how you are with eating? I see your the same as me with breaking wind lol. Does your stomach hurt whenever you eat? xxx
Not really it seems to hurt when I eat around mid cycle and period. But for some reason it feels right tight round there like even when I sit it's like pressure tender feeling. I get extremely nauseas and sometimes don't have an appetite at all. Recently had really bad piles and can't seem to get rid of them I do get constipation but it alternates with diahrreoa that's been a problem all my life despite what I eat the diahrreoa only started a couple years ago. Mid cycle is approaching so that's maybe why. I don't know but it's very uncomfy xxx glad you slept well xxx
I had diagnostic lap which removed a small cyst in December that glued my ovaries to my Peritoneum surgeon is unfortunately recommending surgery either Oopherectomy or a more risky bowel op. Both seem equally unattractive for very different reasons!
Oh wow. Hmmmm I really don't know what to say to that. What your surgeon recommends and what you think is right is so confusing, we all seem to listen to our surgeons and what's best. I'm sorry to say that I'm glad I'm not in your shoes having to decide what's best. ....
Yes, removal of the ovaries sounds perfect to me and is what I'd always go for but as your ovaries are glued down and so close to your bowel, I'd really have to think about it. Have you got any adhesions ?? Has your surgeon explained the risks?? xxx
Just make sure you go into this op eyes wide as you may wake up with a stoma bag on. Not trying to worry you, but get all the info you can. It's a very difficult operation esp if you also have scar tissue 😢. xxx
He did manage to unglue the ovary in op one so that op wouldn't be risky or involve the bowel. It's unclear though whether it will actually help my symptoms depending on cause of the pain ( inflammation vs the lump itself and the distorted bowel position) and i feel young to have something so final done. I'm doing a zoladex trial to see if it may work. Yes I have adhesions that have pulled my bowel out of position.
It was during the lap. I was showed photos in my 3 month follow up. I did have a pre op MRI but was never shown the results so no idea if it showed up.
So as we are all aware the endo is a pretty nasty condition but add adhesions to the equation and your talking dynamite!! As the adhesions spread and branch out clamping onto anything they can, they pull out organs out of alignment. I'd say 9 times out of 10 the bowel......
..... Is almost sure to be affected. (My ovarie is in my bowel). Unfortunately once adhesions have spread to organs there's little that can be done as it makes surgery impossible. Even if surgery is possible to remove some adhesions, the new cut has already started forming .........
....... New adhesions, and they will start to grow and spread. This is my experience and what I've gone thru. It's a no win situation really and all we can do is pop tablets to try to ease the pain. I've realised it sucks being a woman 😂😂 xxx
The hardest part is not knowing what to do for the best. At the start I was resistant to any surgery but my symptoms have gone from feeling fluey and like I had a kidney infection and having life disrupted back in September to having ( luckily only moderate pelvic pain , a new post lap symptom) and being so chronically fatigued that I can't even cope with a full week at work any more and feeling like have no life. On top of that the zoladex aching in the bones and pins and needles feeling is compounded. Really not coping too well any more. I'm going to have to ask for adjusted hours after Easter.
Hi huni, I totally understand how your feeling. I have no life at all now. I'm a zombie due to all the meds I take. If I don't take them I'm in chronic pain and climbing the walls. Mine all started at 19, I'm 47 now. I can't work anymore and totally depressed. ............
I've been thinking about your options and I think your best chance of a "normal" life is to have the surgery. Your surgeon will also do his best to cut away any old adhesions. You don't wanna end up like me. My life is ruined. I try my best to carry on........
I'm on Buscopan too, I must admit I can't feel any change with my symptoms but I've only been on them 2 months. I'm also on pregabbalin, Amitriptyline, zomorph, morphine liquid, Topiramate, sumatriptan, venlafaxine, tolterodine plus creams and pesseries. All high dose .....
Having the problems I have I also now suffer with BV ( bacterial vaginosis) it's a hormone imbalance. It reoccurs and reoccurs. It's awful. I also now sleepwalk often waking up with bruises all over me. I hate my life now. It has no meaning. Please do the right thing. xxxxx
So sorry your endo started so young and has made you so low. Do you know though that long term use of many of these drugs can actually worsen pain so might be aggravating your symptoms? medicalnewstoday.com/articles
I guess my options will become clear to me in due course. At 42, I have 8 years left to menopause. Both surgeries have heavy consequences.
Hi sweetie, yes, I'm under close review all the time with my GP. I also know the effects Amitriptyline can do. I'm caught between the devil and the deep blue sea. My review is due shortly so maybe a change of meds is due. Hope your feeling ok today 😊 xxx
Hugs. Hope some changes may ease your symptoms for a while. I know what you mean deveil and the deep blue sea, it's exactly how I am feeling about my surgical choices.
I wish I could help you more. I really do. I can imagine how hard this is for you. You'll do the right thing I'm sure whatever you decide. Just know we are all here for you.
Buscopan is a muscle relaxant .. good for ibs, period pain and bladder spasms .. any muscular contractions, it will help. Its fairly cheap snd can be bought over the counter and worth a shot! Good luck
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