Anyone had this pain with Endo?...Internal pain, underneath, next to vagina...

It's not pelvic pain - it's underneath and internal, as if something just to the left of the vagina is throbbing? Actually makes me want to press on the bone next to the vagina - well not actually ON the bone, but to whatever is hurting just above the bone. Really hard to explain. Has anyone else with Endo had/having this pain?

(Had Endo removed via Lap 2013 but slowly started coming back which I knew it could, but this symptom is a new one for me and can't find anything on web. It was found in Pouch Of Douglas and Left utero sacral ligament, but didn't have this pain before Lap).

Sara xx

27 Replies

oldestnewest
  • Same story as you. Had lap etc in 2013. Only difference is they removed one ovary and tube as it was adhered to my bowel. It feels like you want to lay an egg - a very big egg! Couldn't stand or walk with it. Went to doctors in tears in fear that the endo had returned which he confirmed.

    Sharp, stabbing endo pains were actually worse 4 months post op than before although deep ache had gone. Vaginal pain being the worse.

    At 6 months I had a 4 month course of Prostrap and that took away the pain. However, deep ache now returned 2 months after Prostrap treatment.

    Now suffering with hip pains radiating to my back at times in hips (not the joint but the upper part beneath ribs). Again new pain that I didn't experience before op. Feels like everything is pulling down.

    Back on stronger painkillers than before and having to decline social activities, internet food shopping etc,etc due to the pain (luckily I don't work because there is no way that I could).

    Waiting for hysterectomy. (Age 46). Can't be soon enough! I really hope that you don't follow this pattern.

    If you have Prostrap be forewarned that you get an initial flare up for 3-4 days following injection. Otherwise it was great to be in far less pain for that 4 month time.

    Evelyn x

  • Hiya Evelyn, thanks for the quick response. I'm sorry to hear the trouble you're having with it - I hope things get better with the hysterectomy.

    Do you get the exact same pain that I have? - an internal pain underneath, next to the vagina? It's just I can't find anyone else who has this specific pain when I've googled. I didn't have that specific pain before the lap so wondering if it's sprouted up somewhere else aswell? Sara x

  • Hi..

    I have had this exact pain, from what I think you are describing (and i read it a few times to make sure I got it right).. it feels like it's inside next to, or on the walls of the vagina. Mine would be a dull ache or a shooting pain.

    So you also have endo in the Pouch of Douglas... I do too, and I believe it is this that causes that particular type of pain.

    I don't get the pain as much as I used to, since my 2 op. But my surgeon referred to mine as an 'Obliterated' Pouch of Douglas. So, I think this is bound to cause pain and pressure in that recto vaginal area, because it is full of nodules and pressure (for example I have not been able to wear tampons for at least 10 years).

    For me, it's logical that i will get pain there from time to time, so try not to worry, I don't think what you have is abnormal for an endo sufferer - well, not abnormal for deep infiltrating endometriosis, which is what this is. It may be that the nodules are pressing on nerves or even the endo in the area could have its own nerve supply (I found a presentation by a neuroscientist that has found that endo and scar tissue creates it's own nerve supply, which is why the pain gets so bad).

    I hope this relaxes you about this somewhat. If you are really worried, then ask for a post op scan to track the status of the endo. I had to have surgery a year after my first surgery, and to be honest, I probably shouldn't have waited that long - so it is very realistic that the endo or a cyst have grown back. My surgeon told me the average time for endo patients needing another surgery is about 18 months, with some ladies being less than 18 months and some being more.

  • Yes, the exact pain, to the immediate left side of my vagina and sometimes right in the middle between my anus and vagina. It felt as if there should be a big bulge down there. I also experienced as if it was deeper inside.

    Again I'm sure I didn't have this before my lap, however, I do remember when I've had previous smears the intense, unbearable pain when they opened up the speculum.

    Also before op I wasn't able to use tampons because of the pain for years and that was long before I had experienced any signs of endo

    I also couldn't find anything on the web and can understand the relief it must be that someone else is experiencing that same pain - although I wish it wasn't me! I was beginning to think that I was going nuts because I started all these different pains that were so different so soon after my op. A lot sharper and intense than before.

  • I just started feeling what you got I don't know where it's from either I don't know if I popped a muscle during sex or something is wrong with me

  • That's where you have lymph nodes - they can get blocked and bunged up when you are fighting off a bug or infection - could be a cough or cold or UTI or anything that causes lymph nodes to go in to bug fighting mode. This can make the groin tender and sore on the surface where the lymph node is underneath it - but with most bugs it clears up eventually.

    If it has been like that for a few weeks then speak to your GP and discuss anti-biotics to give your body a boost to recover.

    It usually bungs up on one side or the other - rarely both. Much the same as the glands in your neck get swollen with a throat infection etc.

    You may be able to actually feel a swollen lymph node in the sore side if you compare pressing that side with the other side.

  • Thank you ladies!

    Evezy and YellowRose - thank you both - you've put my mind at rest that others with Endo have that pain - it's just worrying when a new pain/symptom crops up you didn't have before. Actually, Evezy, come to think of it, sometimes it is in middle further back as if it's behind the womb, and I had a lot of pain during a transvaginal ultrasound the same as you with the smears.

    Hi Impatient - I'm seeing my doc in a couple of weeks to get referred again for another Lap, but I'll mention this pain, but I'm sure it's Endo has it's getting worse along with all the other Endo symptoms. Take care all! xx

  • Glad we can be of help to each other. This is such a fantastic forum and I'm not one for these type of things.

    I'm guessing by the time of night that we are replying we are all sitting with heat pads waiting for our pain killers to kick in. Yet another problem with this awful condition.

    Hope that the pain killers soon work for us all and that we can eventually get some sleep!

    Evelyn x

  • Hello.

    Yes I have the pain you have described.

    I had a lap in July 2012 and the pain started following this. I had a further lap in sept 2013 where the surgeon removed what was found (minimal endo apparently) and could not explain why I still had this pain.

    Does it pull when you walk and get worse when you exert yourself (exercise, lifting etc)? My GP said it's probably caused by the bowel sticking to the pelvis where the endo was removed. I'm yet to have this confirmed by the gynae (I have an appointment next week). He is not very helpful though.

    Fleurbie xx

  • Hi, I also have this pain. Mine started after childbirth and I initially thought it was my episiotomy scar but then I was told that was the other side. You explain it very well Sara, spot on. I'm 6 weeks post hysterectomy and, sadly, that pain is still prevalent, along with some rectal pain. So far though, my tummy feels fabulous, yay!! I too had endo in the Pouch of Douglas, that was discovered during a lap a couple of years ago. I asked my surgeon to remove it whilst he was doing my hysterectomy but I can only assume he didn't.

  • Evezy - hiya again, yes I'm glad i posted last night - it does hlelp and it's good we can support each other that way. I'm gearing up to ovulate which is by far the worst time of the month for me so the pain is worse than last night - i won't move from the sofa till its over! Couldn't do without my heat pad! x

    fleurbie - hiya, yes it pulls when i walk, also if i laugh, cough, or even sometimes breath in deep. Sometimes hurts every time put left foot down when walking. Even though yours was classed as minimal, that can cause extreme pain still cos you could have a tiny pinprick of it and still be in extreme pain. Just like you can have loads endo but hardly have any pain. I hope everything goes well next week with gynae - is it possible for you to ask to see another? x

    jc001 - hi - yet another with this pain - not that im glad we're all in pain! Maybe it will get better once it heals more - just with it being early days? I hope it does for you - keep us updated. x

    Sara xx

  • Hiya

    pain when you sit down (next to the bone) - yep, sounds familiar.

    I've made myself a couple of seat pads with a hole slightly to the left in the padding in order not to put more pressure on this area when I sit down (not too bad nowadays but horrendous pre-lap in 2012).

    The pain gets worse whenever I have been carrying heavy bags (I'm not doing the weekly shop anymore.. ;-) ), bending down to fill/unload the washing machine etc, etc. So I have these seat pads conveniently located at work, in my car and around the house. They are a little bit similar to the seat pads/seat rings given out by physio to some new mothers after childbirth. They help.. and with a nice cover over the pads nobody can tell that there's a round hole in them! I've also found that being on continous NSAID (naproxen) helps and I'm hoping that being on Prostap might just cure it!?

    Good luck xx

  • Yes! And I find it as hard to explain as you. It's like some pressure on a bone or a ledge to the left of my vagina but inside. How bizarre. I used to think it was something out of place. I had endo in pouch if Douglas and ligaments and since my op that strange pain has eased but comes back on bleeding days. It's so hard to explain the location but you have nailed it for me x

  • esbjorn - hiya, can't believe i've never thought of that! I'm forever shuffling and trying to ease the pressure when sitting so i'll definately look into that, thanks! Do you mind me asking what amount of naproxin you're on? I've heard of women who swear by Prostap for Endo - have you actually had it yet or not? x

    SpecialK - hi, it is a weird pain to describe cs its sort of in the middle of your body and with not knowing all the ligaments etc in there lol. It's just a really deep pain that you can't even touch it to ease it either. I'm glad you aren't in as much pain anyway since the op and hope it's not too bad when you have a period. x

    Sara xx

  • Hi Sara,

    I'm sorry to hear that you got this pain so quickly after your lap. Hope seat pads might be of some help. So glad that you've brought it up - I don't think I've seen any other comments about this pain anywhere and I thought I was alone in using my (odd) seat pads (certainly my GP looked at me a bit weirdly when I mentioned them..have changed to a new GP but not mentioned my seat pads yet.. lol). Be careful with heavy weights and bending/pushing. It's very interesting to read Impatient mentioning lymph nodes in this area - after all endo is defined in some quarters as a chronic inflammatory autoimmune disease. So re NSAID; I'm on 500mg-1000mg naproxen/day. The odd day I'm managing not to take them but mostly I have to top up with paracetamol and effervescent codein+paracetamol (the effervescents work quicker).

    Re prostap; I had 4 completely pain free days during the month after my first prostap injection. Fab so far ;-)) Very weird feeling - the pain was just switched off - like a light switch! And your energy levels seemed to return back to pre-endo normal at the same time. So I probably overdid it..clearing out the outhouse.. Don't do anything like that - take it easy.. ;-) This month hasn't been as good but I'm hoping that I'll be on prostap for 6 months. I have read some very positive reviews and it's wonderful not to feel so cold all the time (hot flushes here I come).

    Back to this 'weird' pain that we all have - it would be interesting to learn more. Take care all xx

    PS for anyone not on Prostap/Zooladex yet etc - you're likely to get an endo flare up within a few days of each injection - very uncomfortable although it appears to wane after 3-4 days again.

  • I have had this type of pain, which is so difficult to describe to your doctor or to friends, for about two years now. That was one of the first symptoms I got....awaiting lap appointment for diagnosis after my referral appointment on Friday but consultant is sure that it is endo. I also get the pain that other people in this chat have mentioned, the pain in the hip which radiates out down the back of my thigh and sometimes shooting pain which goes right down to my foot. It is mostly all on left side, which made more sense to me when they found ruptured cyst on left ovary, but it has never left and it is there every day pretty much, but worsens at certain times of month. It has now started to occur on right side too since December but they could not see cyst on right ovary when I was sent for another scan. The feeling of "there should be a bulge" is exactly how I felt too, like as if there should be a huge hard growth which causes the feeling of pressure. I am so glad to hear other people try and describe this weird pain in the same words that I use! I also thought I was imagining it after about a year.

  • Jo83 - Hiya, yet another endo sufferer getting this weird pain! Its annoying as well as painful cos it's out the way so you can't ease it, it's just THERE, nagging away! With the pain in your right hip, maybe the endo is now touching a nerve, causing pain in that area - I read something about everything being connected like a bird's nest so pain in one area can cause pain in another area. You'll have to let you know what happens when you do have the lap. Sara xx

  • Are you still having this pain Sara? I had a lap done by an excision specialist almost 3 weeks ago and the exact pain you are describing started to days post-op. I never had this kind of pain and haven't seen anything else online about this. Hopefully you will see my message and let me know if you have resolved the issue and what it was. Thank you!!

  • Hi Faithamc, I did get a lot of this particular pain at the time I posted. I then went on to have another Lap where the Endo was cut out and like you, I had this pain from the day after the op (I was upset at the time because I thought the op hadn't got rid of that pain). It lasted on and off for say a couple months and gradually stopped, so was just the healing from the trauma of the op. That Lap was 1year 2months ago and I havent had it since so hopefully it stops for you aswell.x

  • Thank you so much for answering me. The pain is bad and just as you described. Mainly on the left side. Wondering now if it is pudendal nerve entrapment, have you heard of that? How long did the pain take to go away. It is really bad when I sit down or stand up the wrong way. Any info you could give would be greatly appreciated :)

  • Hiya again. If you didn't get this type of pain before the op, it could just be caused by the op itself and will go when you heal, like it did with me.

    I'm convinced my lap resolved the problem, and I only had it from day after the op due to the op itself, and as it healed, the pain stopped and never returned. I would say it was about 8weeks ish.

    With regards to what caused that pain before/leading upto my op, my endo was on both uterosacral ligaments (going from back of womb towards small of the back), also on front of my bowel and also my left fallopian tube was pulled out of place and stuck to the side of my womb! I have no idea which bit of endo caused that weird internal pain, but like you, it was definately worse when I sat down or if I stood up too quick. Also if I stretched my arm up it could cause it. I used to get it on mainly the left side, but sometimes it was on both. Definately a horrible pain which is difficult to describe.

    When I got it after the op, I did think it could have been pudendal nerve entrapment but like I say it went afer about 8weeks or so. I know the feeling of going through the op only to still be getting pain after, but I hope you find that it passes in time.x

  • Thank you Sara.. You have given me hope. Yes i started feeling it exactly 2 days after my operation. Had same Endo as you except non on tubes. My doctor is going to call me today but I am so worried that it is the nerve since all the symptoms we have are that of PN entrapment. I don't want to be stuck with this pain forever. Have not had Intercourse yet and don't want that to be another point for pain... I am 3 weeks post op tomorrow, pray this passes! Thanks again!!!

  • Hiya, I'm glad I've helped a little bit! I understand you being worried about PN entrapment, because that's what I thought after my Lap aswell, and I'm not a doctor, but I would really think it's more likely to just be something that will pass as you heal, especially as you had endo removed from the same areas as me, minus the tubes. You'll have to let me know what the doctor says today when you talk with him. Take care. Sara.xx

  • Hello! I know this is a bit late but I'm still hoping that could help me. I have the same experience. After my menstruation, there were brown discharges. And worse, the left side of my vagina hurts. Sometimes, it hurts when I touch it, sometimes it does not. I think the pain is in bones or whatever or above it but it's inside. The only thing is that I did not have any operations on my endo or any operations in my body. Can someone here please help me? I'm 23 years old.

  • relate to pelvic congestion syndrome. because i ve same experience as yours. seek gynae + urologist

  • I have the same pain my GP said it was a prolapse went to see a gynocolagist said it was hormones,pain getting worse went back to GP. Has X Ray's know he said I might need a hip replacement and my lower spine bone is showing lots of deteriating signs, has a hysterectomy 3yrs ago where do I go from here

  • I have the same- shooting pains, pressure and burning sensation. Have to sit with the heat pack in between my legs - not the best look but needs must! I have had my endo removed but still suffering scare tissue possible or adenomyosis is being investigated. Hope you find what works for you to ease it! xx

You may also like...