Endometriosis UK
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Follow up appointment

Hi I don’t post on here much but I’ve been waiting for a 6month follow up appointment with gynaecology. I’ve never had a lap done and only seem a gynaecologist once. They toldme they thought i had endometriosis and to try the pill again after not using it for 4 years.

So I’m on cerelle and its pratically stopped my periods apart from occasional spotting which is great. But I have been experiencing a lot og lower back pain and hip and pelvic pain especially when sitting down and i get bloated and painful gas occasionally. I get heavy legs a lot in the evenings. I also have had weak bladder since i was a teenager that sometimes is ok but feel very weak the last few weeks. I felt like my pain was improving so don’t know what to say in my appointment. I don’t want to be ignored because I’m not in agony but i still have some pain every day. I don’t know if it is endometriosis or something completely different. So not sure whether to try have anotber ultrasound or try and push for a lap or just wait and ask for another appointment in a few months? Any advice would be appreciated.

Em

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Hi,

The back and hip pain sounds like what I experience. I also have really bad fatigue. I've only just been diagnosed through a referral to orthopaedics due to the hip /back pain and had an MRI which found severe endo.

From my experience with this pain, it's got considerably worse in the 18 months I've had it. Although I'm not on any medication for endo. It used to be intermittent and now it's constant and its not just pain, I have issues moving my hips & back fully. If it is the same kind of thing, I think you definitely need to get the consultant know. From what I've been told and read, this could be due to adhesions. I don't know what can be done but I think it's best to let the dr know all your symptoms, even if they don't trouble you as much as your other symptoms that have improved. The severity of symptoms doesn't always relate to the severity of endo so it's probably not helpful to make any symptoms about this - maybe just let the dr know and see what they think?

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Thank you. I saw a doctor about my hips when they were really bad and now seeing a physiothereapist but its hard to tell what causes the pain. My job can be quite physical so I didn’t know if it was that but all this new aches started at the same time and then have changed. My hips and back isnt as bad as yours i can move fine although i do occasionally feel like a nerve is trapped. I think i will see what the gynaecologist says and go from there. I was hoping to get an mri just so i would know for sure but i think it’s difficult sometimes as I don’t look like I’m in any pain as it mild most days but never seems to really go. Tbanks for the advice. Xx

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Hi Em!

It may be a good idea to have another thorough exam to find out exactly what is causing your pain. It could be something as simple as an infection. If it is endometriosis, the condition can get worse in some cases. However, Medicine is discoverify new treatments daily. I have read that emdometrosis can cause hip pain, leg heaviness, back pain, weak bladder etc, but so can weak muscles of the pelvic floor, Chronic Fatigue and Fibromylgia. I am not a doctor but, I do suggest that you consider getting a second opinion if efforts are not being made by the doctor to discover the exact cause of your symptoms. I occasionally have bladder pain and urinary frequency as well. As I said, I am not a doctor but, I find that adding a half teaspoon of baking soda to a glass of water and drinking it resolves my bladder issues. Please check with your doctor first. I pray that you get a definite diagnosis, treatment and pain relief very soon, my friend.

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Thank you my bladder issues have been something ive had since i was young but I fractured my pelvis when i was 10 and now believe its linked to that. I only started having really awful periods when i came off the pill. Then all these other pains and aches started last year which is when i went to the doctor so its all a bit new and confusing. I will tell the gynaecologist i see today and see if they suggest anything else. Xx

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Hi Emcox

I have the same issue, I had a lap with a lot of work done, left ovary, fallopian tube and appendix removed and endo lasered off all a lot of places. I have been suffering with lower back pain, right groin pain, bloating and painful gas, sometimes this is excruciating and at other times its like I am 100%. I have looked into it and think I have adhesions, I am waiting for my follow up appointment which will be 7 months after the operation. If yours comes and goes like mine without reason then you need to tell them this.

I have just been to my GP for a second time and I have now been given morphine for the pain when it does happen as nothing else they have tried touches the pain.

I hope you get it resolved.

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Thanj you

I’m really lucky because my pain really isn’t that bad I rarely take anything for it. When it has been bad I generally use a hot water bottle and ibuprofen. Being on the mini pill has helped as i no longer have periods but the gynaecologist i saw today basically told me that my aches must be caused by something else like arthritis and ibs. Which i knew they would say that! But she has let me have another ultrasound and will see me again in 6 months and she said if i really want a lapscaropy done then i can ask for it. I’m not sure it would help much atm. I will see if my ultrasound shows anything and try push my gp for an mri if my pain continues. Xxx

I hope you manage to sort out some pain relief soon are you on the pill or do have a mirena coil?

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