Living with Endometriosis

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Wednesday 22nd July after a exploratory Laparoscopic Surgery I got diagnosed with Stage 4 Endometriosis. My bowel and Ovary infused, along with the Fallopian tube damaged. My journey to how I got to that day was painful, even writing this blog post makes me very anxious as I recall all the traumatic pains, constant nausea, migraines and extreme fatigue.

It started 2 years ago early spring 2014 , I was at work and I was suffering from a headache. A really bad headache, made me feel very nauseous. As the day progressed to an end, I was contemplating should I stay for a Staff meeting with the company I work with. By 5.00 p.m. I couldn’t take it. Its very uncharacteristic of me to leave work and not attend any meetings or see through to my working hours. I went to my manager and requested if I can leave as I didn’t feel well. She looked at me very shocked and nodded yes that I can go home. I was wondering why my manager looked shocked, and had my answer when I saw my reflection in the mirror. I was very green on the face! I just wanted to get home and close my eyes, as it was hurting so bad.

Once I got home I vomited, cleaned up and went to bed. I was off for a whole week and bed ridden, by then I’ve managed to figure out that I’ve had a migraine. With motion sickness, I couldn’t stand being under any lights or any kind of movements just plainly hurt. Furthermore, my left side of the leg hurt a lot. Never had that before. It echoed through my pelvic area to my left thighs. It was very odd! I’ve suffered from migraines when I was younger and more during my adolescent years. However, I grew out of the migraines and haven’t suffered any in my late teen or throughout my twenties, until 2014. Once I’d recovered from the migraine I went on to leading normal life. But not nothing was normal after that.

Through Spring towards Autumn I was having pain sporadically, I got referred to get a ultra scan, to find the cause of these random pains. I was then diagnosed with Ovarian cyst on both sides off my ovaries. That became a waiting game, to let it resolve it self and disappear. The right side cyst was very accommodating and did me a lovely favour by going away on its own. Nevertheless, the left cyst was persistent and gave me trouble!! Oh the pain, it was worsening every month and My PMS was not helping either. The abnormal pelvic pain, leg pain, and bloating, along with other symptoms mentioned. I had a scan every 3 months via referral at the Gynecologist to keep a watchful eye on the cysts, especially the left one. I was more bed ridden, with a hot water bottle and it was depressing. I’m an active person and always have been.

As the time went on, I carried on as usual – working long hours, 5 days a week – with the pain getting more potent as the months went on. The fatigue was taking its toll on me mentally and physically. I just wanted to cry my heart out because I was just SO tired! My life consisted of waking up, work, home and sleep. I was newly promoted to a new position and I was relentlessly working myself to the ground. My job is physically demanding and so rewarding. I love my role and responsibilities, the people I work with and the clients. I showed up everyday despite my body screaming out in pain. I could barely walk properly because my left side of the pelvic was just so foreign to me. The amount of pain killers to help diffuse the pain was becoming a joke. I was so sick off just popping the medications. Due to how I was and in correlation with my Doctors, I was given different methods of pain reliefs and I was doing my own home remedies. So I don’t have to take so much of the tablets. Lets just say Apple Cider Vinegar and Peppermint tea are off my list of beverages.

I had a blood test done and then I was called into the doctors office. My mum went with me. It was a Locum Doctor who saw me and he gave me the news that my blood test come back negative. The result was that I had CA 125 – this a marker most commonly used to diagnose ovarian cancer – the doctor explained what it was and what our next step should be. Once all the information was digested, I crumbled into tears and my mum couldn’t understand why I was so upset and what was happening. So I incoherently translated it to her to explain what I was just told, still reeling from the news. I was over seen by my doctors to ensure nothing sinister was happening and I didn’t have Ovarian Cancer. The support I got was unbelievable from my friends, family and colleagues.

By July 2015 the pain was excruciating and I’ve been from the A&E, Gynecologist, Walk in Center and to my GP in a matter of a week. Yet no one could do anything or figure out what was happening. They were very sympathetic, but couldn’t do much and gave me an emergency number to the hospital, just in case. This was on a Thursday and by Saturday I was in a bad state and I called the emergency line given to me by my GP. I got a late evening appointment and went in with my cousin and my mother. The doctor did the check up and saw how I was crippled over in agonizing pain. She then sent me to the Emergency Gynecology ward and they started to treat me with painkillers. But nothing took effect and they couldn’t understand why. I was vomiting and doubled over in pain, I attempted to walk the pain off to help elevate it. My cousin and mum were so terrified watching me in the condition I was in. Neither, have seen me like this and couldn’t understand why I wasn’t reacting to any medication. Five days in hospital, the doctors tried to get a scan done but to no avail. I’m still in pain, especially at night time I was at my worst and due to the extreme pain I passed out twice. The nurses were amazing and took care of me so sweetly, rubbed my back, assured me with kind and positive words. Yet the pain continued, down my leg, pelvic area and the constant vomiting. I was so out of my mind. Since they couldn’t get a scan, the doctors decided they’ll do an emergency laparoscopic surgery to find out what is going on, no more waiting around.

I had my exploratory surgery and I finally got diagnosed with Endometriosis and the surgeon put a plan in motion. They injected me with Prostrap to help control the Endometriosis and control the pain. They then assigned me to Dr Edi Osagie and his team who specialize in Endometriosis. I met Dr Edi Osagie, he is such a lovely man. He went through the treatments that they’ll do and see how I respond. Furthermore, whilst the treatment is ongoing they booked my surgery after 6 months. I was in constant contact with Linda Green the Endometriosis specialist nurse. The team were brilliant and so caring. Not once did any of the professionals doubt me or say its all in my head or I’m making it all up. They took my word and saw the condition I was in and took care of me. They also did a 3D scan to see the severity of my ailment. The result wasn’t good. There was a lot of damage and my Fallopian tube was in a state of not ever being restored. They warned me about my fertility and the chances of me having children will be difficult.

The treatment was going well and the Prostrap Injection was a god sent miracle. I had aches and mild pains. But it did do the job of eradicating the chronic pain. I worked out to get rid off joint pains and keep my mind focused. I really enjoyed working out at my own pace and in my own space. Because of Endo I got into Yoga, which helped target the problematic areas in my body. Its so peaceful and relaxing once I did a session. My left side of the leg still trembled and ached, yet it was manageable. I went back to work part time as I couldn’t keep up with the hours and the demands of the physical side. Furthermore, due to the Prostrap injection I was MENOPAUSAL!! So a lot of hot flushes, I couldn’t kneel because of joint pains and my bones going snap, crackle and pop. Aside from all that, I would rather have these side effects than the Endo pain. I was given the HRT tablets to minimise the side effects. However, the tablets didn’t agree with me and it kept giving me the Endometriosis symptoms again. So I stopped taking them and supplemented them for with vitamins and foods that contained organic vitamins. My diet change helped along with reducing the constant bloating.

Fast forward to my surgery date, the Colorectal Surgeon cancelled two days before going into the hospital. Due to the surgeon having some personal reasons. Thus I was back to waiting again for another five months. I was kind of glad about that, I had intense relief yet in limbo and I took it as a blessing in disguise. I wasn’t yet ready to be cut open or for all the things they’ve said could happen to prepare me with worse case scenarios. I took this time to focus on my diet and physical strength more by working out routinely to build my stamina. Also to help maintain my weight because the Prostrap does make you gain a few pounds or a stone. I managed to successfully control the weight gain and feel confident in myself. If and when I had a lousy day, I would make sure to listen to my body and stop. I’d allow myself to feel all the emotions and address them with clarity. Otherwise I’d feel very jumbled headed and confused. Which has happened a lot! Comprehending things became a challenge. Luckily I had a very supportive friends and colleagues, who learnt about my conditions and took the time to help me at all times. I was so blessed to have my dearest friends and family. Which allowed me to be very positive and happy regardless of what was going on.

Once I was given a new date for the surgery, I was ready. I had the Surgery early August. I went to the hospital on my own and got admitted. I didn’t want anyone with me because I’ll be too concerned about the other persons welfare instead of focusing on whats going to happen. So I did it all by myself with the support of all the amazing nurses and surgeons, along with a lovely lady who was having a procedure done for her self. Once I was taken to the theatre, they prepped me and kept the atmosphere light and humorous. Because I was crying, very scared of the outcome once the surgery was all over. The Anesthesiologist and the nurse kept a steady communication with me and asked ‘What would you like most, once the surgery is over?’ My reply was instantaneous. ‘Cheese Burger with fat chunky chips’. They were both surprised as they didn’t expected that answer. Chuckling, the Anesthesiologist seemed to be pleased somewhat. He said ‘That’s one answer I wasn’t expecting!’ I wanted to ask why but I was already going under and was soon in oblivion.

The surgery was suppose to be Four to Five hour surgery but I was in there for over Six hours plus 2 hours in recovery. Boy, was I out of it! Apparently I was vomiting a lot and kept on passing out. I recall few moments here and there when I became conscious. I remember the nurse looking after me all throughout the night as I was in and out of sleep. I had pain on my right sight and I flinched anytime it made contact with the gown or the nurses prodded it. Once the medication slowly wore off, I became more coherent and was very sore. I was terrified that it didn’t go well, I had a colostomy bag and a deep incision. Dr Edi Osagi walked in, more like floated in like an angel. He reassured me the surgery went well and that they got the effected areas and also found more on the right side of my ovary. It was a long surgery and I had no colostomy bag or a big cut along my pelvic. I had Five keyhole surgery and both team, the Endometriosis surgical team and the Colorectal surgical team completed the procedures satisfactorily.

These are the following procedures I had;

  • Laparoscopic radical resection of rectovaginal, pelvic and ovarian endometriosis  Bilateral Ureterolysis
  • Rectal disc resection
  • Cystoscopsy and bilateral ureteric catheterzation

I was in the hospital for four days and was then allowed to go home and recover in my own environment. Once home, I was somewhat immobile and dependent on my parents. Week by week I slowly gained strength and was getting more active. I walked around at a pace and it helped reduce the air in my stomach. I’m not yet 100% but I’m slowly recovering and there has been no complication. I have my 13 weeks check up soon. Furthermore, I’m no longer on Prostrap Injections. It is still wearing off and I’m having some mild pain. If I do too much physical activities, I get very shaky and have to lie down to recover. I’m very nervous once the injection completely wears off. So I’m now currently on week 10 post surgery and I’m keeping my self busy mentally. Doing small workouts to help me build my stamina again.

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The help from my parents, brothers, my cousin Rhea and my friends Donna, Selina, Wes and Chloe (who also had Endo) have been so wonderful. Seeing me through the most difficult time of my life has been so hard on my family. Yet they have been positive and caring throughout it all.

My friend Amy has been such a strength. Amy has been with me from the beginning and has took the time to learn all about Endometriosis. She went to the Endo Awareness charity event and gained a lot of knowledge. She was in awe of all the ailments mentioned and linked them to my conditions, it all fell into place for her that yes I had endo and all the grief I was going through wasn’t phantom. She’s been so wonderful in keeping me company, sane, active, taking me outside and both of us cooking together has been so much fun. Also watching films after films and having a marathon of Friends episodes, which we both love. Thank you Amy for being such an amazing friend and simply being here for me. I love you.

Now I’m hoping and looking forward to being happier and healthier. Unfortunately, in the future my fertility will be a challenge or I may not have children. It makes me sad but I’m O.K with it for now. I’m so grateful to Dr Edi Osagi, Linda Green and their team, along with the Colorectal Team. Both team working so hard and reassuring me that I’m was in good hands and for telling me that they are the best!!

I’ve learnt a lot about myself from this Disease. Mentally, I’m more stronger and having my faith in my religion and my people who have been with me has been a blessing.

I wanted to share my story in hope that it’ll help women. If you have abnormal pelvic pain, cramps on your legs , abnormal bloating, hemorrhaging, chronic fatigue or ovarian cysts; seek your doctor and don’t be silent about it. Many women go through the pain because they are told it’s a ‘women problem’ and go undiagnosed. I was very lucky to have been to referred to Dr Edi Osagie at St Mary’s Hospital in Manchester.

If you have any questions, feel free to ask me and I hope this helps in knowing that you are not alone.

Mumtaz xx

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