Endo is back 😢

Hi all, I've not posted for sometime as I was lucky enough to be pain free for a while. After years of agony and every endo symptom you can think of, I eventually had my severe stage 4 endo removed in May 2014. The recovery was hard but worth it as by the July I was finally pain free. This is thanks to 2 incredible surgeons. I was given a year to try for a baby before needing IVF and I'm pleased to say by the December I was pregnant! So there is hope ladies!

My pregnancy wasn't plain sailing, I had lots of pains and urine infections but I coped and gave birth to a beautiful baby boy in August 2015.

Obviously after giving birth you bleed a lot. I bled for the full 6 weeks, had 2 days off then my first period arrived which was awful! My GP had to take me off the mini pill and put me back on the combined pill as I just didn't stop bleeding. My first 7 day break in November was horrendous, pain & heavy bleeding. I was getting through a whole pack of 12 sanitary towels in one day! I also found the return of the lower back/pelvic pain into the right hip & down the leg. This pain carrys on into the week after the period aswell.

I am allowed to tri cycle my pill, so didn't have to take another 7 day break until last week. Since November I have had my pelvic pain on and off but have just got on with it. My period last week I actually thought I got off lightly. I coped with the pain and the bleeding wasn't as heavy as last time. But since I started my pill again Monday just gone I have been in agony!! I have had to get on with things having a small baby but each evening I'm laid up with a hot water bottle. By Friday night and sat daytime and still today as I'm typing the pain is so sharp in my lower back/hip & down the leg that I've returned to bed in tears. Luckily husband home to look after baby & my 6 year old but he'll be back to work in the week & I've no idea at the min if or when this pain is going to bugger off!

I just can't believe I'm this bad again already and just feel so deflated thinking I've got to go through all this again 🙁

I had a internal & external scan thurs just gone so will see what my consultant says when he's checked that, I've also emailed him telling him how bad it's suddenly been this last week. Sadly he's retiring in March, I'm really hoping his replacement is just as good.

Has anyone else had a similar experience of it returning so soon. I kind of always expected it to at some point but didn't think the level of pain would be quite so bad so soon. I just don't know what the next step from here will be. If they want me to just manage it I don't know how I'll do that. Paracetamol & Ibuprofen or Naproxen just don't work. I'm scared to ask for stronger meds again as I used to be a zombie on them back when I was poorly last time and I don't want to be like that with a baby to look after. Any views or opinions or support welcome.xxx

6 Replies

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  • Hi - As you had stage 4 endo and a frozen pelvis I assume your lap was done in a BSGE endo centre where you will first have had an MRI to locate deep endo. Where did you have endo and presumably they excised it all? The symptoms you describe suggest deep endo and given that you have had a pregnancy since surgery it is very soon for such symptoms to be back. My concern is that it was not thoroughly dealt with as this stage of endo requires the most highly skilled surgery that even some of the centres are reluctant to tackle. You need the best of the specialists. I wonder if you should be looking at a different centre. Where are you in the UK.

  • Hi I didn't have an MRI, I had a diagnostic lap in Nov 2013 where they discovered stage 4 and frozen pelvis, then had it removed in May 2014. I'm in Plymouth and back along this did come up as a bsge accredited centre but looks like it only comes up now as a provisional centre. I'm guessing it's dropped down as the endo guy there has been semi retired for a while and is retiring fully in March so I reckon he's not done enough ops in last 12 months to keep it as a accredited centre.

    I had endo cut away but only shaved off my bowel, he was confident he got it all at the time. I can't see what else this pain can be, it's exactly how I used to feel and the fact it's following a period is too coincidental. I feel completely lethargic and drained too. Also have had bleeding from the bowel at times again too.xx

  • Not all rectovaginal endo can be seen at a lap as deep endo can be outside the peritoneum in the rectovaginal septum. This area would only be dissected if it were already known you had endo there which could only be known from pre-operative scans. The first thing that should have been done was an MRI before surgery. Do you know if you had endo (with or without nodules) in the pouch of douglas?

  • Oh god I don't think I've ever asked enough questions 🙈 All I know is that it was everywhere! Yes it was def in the pouch of Douglas. He found one of the biggest lumps of endo he'd ever seen in there.

    I will see what he says when he gets back to me. I think as he's retiring I won't stay with my local hospital. It looks like Truro in Cornwall is an accredited centre so I could ask to transfer there. The other thing is when I had my scan this week the lady said to girl she was training to press down on my uterus and she should see it spring back up on the screen. She did it, frowned at the screen and then said 'have you got endometriosis' I just said I did but had it removed and this was a check up. I wonder what she saw to say that.xx

  • A frozen pelvis means that pretty much all your organs are bound together with adhesions (scar tissue) and so are effectively fixed. It may be that they didn't remove all your adhesions. This may have contributed to your pain with pregnancy but on the other hand you went to full term with a healthy little boy resulting. Maybe your uterus is still not as mobile as a normal one would be. I think the tell tale sign for you is that your pain is cyclical and that does suggest you still have endo. It could be new of course but to be having these pains does suggest you may have had deep endo not fully excised and that an MRI is definitely warranted. You could also have adenomyosis but I think if your uterus had looked abnormal this would have been reported as enlarged, boggy or spongy - words to that effect. Whether this would have an effect on the pressing down of your uterus at the ultrasound I'm not sure. In any event the specialists are out there to help and you can see anyone you want. It's worth travelling out of your area to one with a well established reputation for finding deep disease that perhaps other centres might miss.

  • Thank you. Yes I guess it might not all have been removed. Even if a tiny bit in there doesn't take much to cause pain. I have a funny shaped uterus too (bicornuate). I think I will definitely be transferring centres after March.

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