Return of symptoms 4 months after removal of endo?

[Casslou27]

Hi im 22 and had a laperoscopy in nov to remove suspected endo which they found on my womb and only in small amounts. My symptoms before surgery were extreme and very painful. It affected my bowel (severe pain after using the toilet) m bladder ( severe pain when needing a wee) my periods have always been bad as i have a blood disorder but these worsened too i also found sex painful and then it became impossible. I would bleed irregulary. Since my surgery i had a couple months of feeling generally better but now all my symptoms are returning with less severity than before. Im really beginning to get frustrated as i was told by my specialist that after the op i would return to normAl with just a 30% chance of the endo returning but not this quick! Anyone have any advice or similar situation. It is making me very down now as i used up alot of mental strengh getting through it the first time!

Thanks

Al

[Cloudyrain]

Ah it's really hard honey.

I was unfortunately back at square one quite soon after my op and wish I would have gone on prostap for 3 months after my op, but I wanted to see if we could have a miracle pregnancy you always read about!

Are you ttc? If not they should be considering something as simple as the pill or mirena coil, or even gnhr like prostap or zolodex. They could also look at low dose norethisterone be foe and during your period that can help reduce heavy flow.

If you call your consultant you should be able to arrange an appointment without having to go through your GP: don't leave it any longer, you shouldn't have to suffer like this x

[Impatient]

Some of that pain can be endo, some of that can be from adhesions or scar tissue from the surgery and endo, which grows and grows gluing organs together. Each op these can be cut back but they will grow again. Adhesions are what causes painful sex for most ladies. It grows in an/or around the cervix and/or vagina and constricts around them making them unable to stetch or move much at all.

Cutting them back frees up the organs for a while but they always grow back.

and every operation to cut them back just causes more scar tissue to grow as it is a natural process where your body is forming a safety barrier against future injury.

Are your symptoms of pain mainly during your periods when the endo is active or randomly at any time?

If mainly during your period then you might want to consider stopping your periods by one of the many methods available. Contraceptive pill taken back to back, mirena coil, or as a last resort hormone treatments.

If the pains are happening throughout your cycle then it might not just be endo that's causing the pains.

Have you had any checks on your bowel to see why going to the loo is soooo painful?

There is another condition similar to endo, called adenomyosis which is not often visible during lap ops. Because it only grows inside muscle walls. Mainly the muscles around the uterus, but there is some speculation that this same adeno can be found in the muscle walls around the bowel too.

It's a remote possibility that it could be adeno behind you pains.

Having an MRI scan to check the thickness of the muscle walls of the uterus and the bowel might show up thickened areas which are reacting to your period hormones by swelling up.

There is a website for adeno which is worth reading through just incase it's that.

Do see your GP about your symptoms and especially about the bowel pains, as that is not normally found in people who don't have endo visible on the bowel or in the pouch of douglas, unless it is something else causing it other than endo. It does need looking in to as it isn't likely to resolve itself without help.

Here's the link for the adeno website:

adenomyosisadviceassociatio...

[motherfella]

Mine came back two months after my laparoscopy and I was put on the pill Provera aswell as having the mirena inserted during the op. The pill worked for a bit but now I might be going on to the monthly injection that causes menopausal type symptoms. I'm not ttc as I've had my two so I'm willing to try anything.xx

[Casslou27]

Thanks for the replies. I have been on the pill since 15 as i have a clotting disorder called storage pool disorder this means i have always had terrible periods with pain and clots and really heavy. My symptoms started a few years ago as dificulty and pain during sex and also bleeding afterwards the beginning of 2012 was when the severe symtoms started. Pain when i needed a wee then led to pain before and after weeing and also before and after emptying my bowel then i stopped being able to pass my stool and was put on movical and docustate then the constant stomach pain throbbing deep inside all the time and leg pain too and i was tried with tramadol asni cannot take ibuprofen due to blood disorder the tramadol made me very anxious and was definately not suited to me i was then put on pre gablin which after kicking in did help the pain however my pain did progressively get worse s i had to up the intake of pre gablin which made me very tired and had to be off work for a few months waiting for my lap op and things were very dark and gloomy till my op. i was very optimistic after waking up i had two small patches on my womb and the surgeon removed the whole womb linng and said all other organs were fine, i did hoever have a bleed when my bowel was touched as i had to have a blood transfusion of platelets to help me heal and these hadnt kicked in when she started the op. i was told and shown afterwards that the extent of my end was minimal, i should go back to "normal" and 30% chance of coming back. My sex life has stayed very much the same if anything worse. I bleed black blood even if my bf tries to manually get me there not through penetration, even if i get turned on i ache down therein a bad way. And my abdominal pain is coming back as well as the pain after kgoing to the toilet. I did have a month aer myop where i felt normal so im worried my endo has come back very quick. Please help im sooooooooo no coping with the realisation that this condition my be for life! X

[jordanneb91]

I am in the same boat! I had my laparoscopy in January, coil fitted however symptoms are all returning. I have a check up appointment next week with my gynecologist so will bring it up then but really does feel like back at square one all over again!

Did you get any answers?

[lauraca1]

Hello,

Did they remove it by excising the tissue? I'm sure that is incredibly frustrating! I just finished an awesome book on endo by one of the top excision surgeons and it was so helpful overall...especially validating the emotional piece of endo and how it can affect so many areas of our lives. amazon.com/dp/B017US3UBK/re...

[VictoriaaPlum]

I'm the same too. I had a lap last year and since then after about 4 months my periods were unbearable again but more severe. I spot sometimes too. However i was on the pill taking it back to back for 3 months...periods were always bad before but now they are excruciating! I had my first course of Prostap injections on Monday so we will see how I go on them... I didn't want to go for the injections as once you come off them you have to wait 6 months before you can even try for a baby if you wanted to, as the drug remains in your system for ages. They literally said to me it's the Prostap or surgery again, but constant regular surgery does damage the uterus which will make it harder to conceive too. So can't win really. I was so poorly after my lap too so it's been hard to make a decision but after a horrendous weekend of being on before having the injections I went ahead with it. The only way of fixing it is a hysterectomy, however that isn't practical being only in my early twenties. X

[STEVILUV]

I had surgery 5 years ago when it was discovered. I was never completely out of pain😩 I can only function on oxicontin. I went under the knife again 4 months ago because the pain became unbearable again much like you.. sex and standing long periods, dancing and going no1 and no2 hurt 😔. I found a specialist and thought I would be pain free... but I’m beginning to realize that my pain isn’t going away. All they can do is remove as much as possible, but our insides are scarred and therefore we experience pain. It’s important to have it removed every 5 or so years as to keep it from penetrating the bowels and other organs.

My heart goes out to you and all the other souls that are in pain. I pray that there will be a cure... but I believe that we just need God’s return so we can all have those perfect bodies and live in love. We need to pray for God’s Kingdom🙌